Susan J's Cancer Blog

"GET SMART": GENES, MUTATIONS, CONTROL, CHAOS

When last I posted, my man was continuing to receive the onivyde plus 5-FU for metastatic pancreatic cancer; however, there have been a number of developments over the last several months that led to a welcome change in treatment. As I mentioned, he was hospitalized last November with sepsis of unknown origin - and even though he fully recovered the hospitalization led to a pretty significant loss in weight and overall generalized weakness. I realize in retrospect that we were experiencing a profound loss of control: of his disease, his gait, his bladder and bowels. He became much less steady on his feet and began to fall again (thankfully, only around the apartment and not outside on the concrete sidewalk) - something that had not happened for over a year. He barely made it to the toilet on time - and occasionally did not. Dr O'Reilly could see that the chemo was wearing him out, and recommended that we test his tumor (a second time) for any targetable genetic mutations. We were glad to do so - hoping that a new line of testing would perhaps lead to further and better-tolerated treatment options. And so it did. 

His tumor (a piece of the specimen removed during the Whipple surgery in January 2010) had been tested perhaps five years ago by a company called Foundational Medicine. No mutations were found at that time and so he continued with conventional gemcitibine-based pancreatic cancer chemotherapy. Sometimes the gem was administered alone; at times with xeloda; other times with abraxane. Slowly, it became evident (as his tumor metastasized from the pancreas to the lungs to the peritoneum) that he had run out of gemcitibine-based chemo options - and it was at that point that Dr O'Reilly suggested we commence a second round of genetic testing of his tumor. Frankly, we were surprised. Who knew they saved the yucky thing for so many years? (I'm guessing that at some point prior to surgery we authorized the retention of his tumor, gallbladder, part of the pancreas and other tissue that had been surgically extracted, but I'm in a bit of a fog on this point. Naturally, we were a bit unhinged by the pancreatic cancer diagnosis at the time, and careful reading of hospital admission paperwork was not a huge priority). So MSKCC (not a private for-profit company this time) did another round of tests, this time on germline cells. I'm unclear as to whether Foundational Medicine did germline testing the first time around and inadvertently got a false negative, or whether germline testing had been developed and/or improved in the intervening years between Foundational's first testing and MSKCC's second go-round. For whatever reason, MSKCC's germline tests revealed a significant mutation - one that has had profound therapeutic implications. 

Here's a brief primer as I understand it: The DNA of each cell in the body contains genes (there may be as many as 30,000 different genes in each cell) that control how the cell functions - including how quickly it grows, how often it divides, and how long it lives. Genes are located on 46 chromosomes, which are arranged in two sets of 23 chromosomes - one set of inherited from each parent. Genes control cell function by making proteins that have specific functions and act as messengers for the cell, and in order to function properly each gene must have the correct instructions or "code" for making its protein. Cancer may occur when one or more genes in a cell are mutated, which creates either an abnormal protein or a lack of protein that causes cells to multiply uncontrollably. There are two basic types of genetic mutations, Acquired and Germline. Acquired mutations occur from damage to genes during a person’s life - such as from smoking, untraviolet rays, viruses, etc. Germline mutations are found in every cell of a person’s body, including reproductive cells; accordingly, these mutations pass from generation to generation.

My man was found in the germline testing done by MSKCC to have the BRCA-1 mutation - the same mutation many of you may recall caused Angelina Jolie to make the difficult decision to have prophylactic mastectomies to reduce her chances of contracting hereditary breast cancer. BRCA is a Tumor Suppression gene - something that limits cell growth by monitoring how quickly cells divide, repairing DNA, and controlling when a cell dies. Mutations in these genes may cause cells to divide uncontrollably, with the result, of course, being a cancerous mass. It is estimated that cancer caused by germlne mutations accounts for roughly 5-10% of all cancers; indeed, BRCA-1 mutations have been known for some time to be linked to hereditary breast and ovarian cancers. During the last several years, a number of new treatments designed to target specific mutations such as BRCA-1 and BRCA-2 have made their way through FDA approval to the patient population marketplace - and many of these treatments have been true game changers in their ability to control otherwise virulent cancers. 

Lynparza (Olaparib) is a PARP inhibitor found to be an effective treatment for breast and ovarian cancers in patients with the BRCA mutation. It has been studied in other cancers as well and will most likely be FDA-approved for pancreas cancer in the future. PARP inhibitors are drugs that stem the production of a substance known as poly ADP ribose polymerase (PARP), which is an enzyme that is conducive to the formation of many cancers. Since these cancers are dependent on PARP to survive, anything that inhibits the production of the PARP enzymes may be, according to our Dr O'Reilly, a viable treatment option for BRCA-positive pancreatic cancer. We are regularly astonished at how lucky we are to have an oncologist who thinks outside the box and opined that my man might benefit from the use of a breast/ovarian cancer drug! Even better: lynparza is an oral chemo that can be taken at home (we definitely needed a break from the constant wait to be called to the chemo infusion suite at MSKCC). The challenge: insurance coverage, naturally. Not only were we facing insurance issues in the off-label use of a breast/ovarian cancer drug for pancreatic cancer, we ran into another difficulty when we discovered that there was but one dispensing pharmacy for individual patients in the entire country for this drug. There were several hellish weeks where I was spending every spare moment on the phone with either the insurance people or the pharmacy people. Coverage was initially denied and an appeal taken. Particularly galling was a short-lived period of celebration when we we informed that (finally!) insurance coverage for the lynparza had been approved - only to be served with notice from the pharmacy that they would be requiring a "dispensing fee" of several thousand dollars for each delivery cycle. When I called to give them a piece of my mind, they actually tried negotiating me down from several thousand to a couple of thousand. 

Kudos to Dr O'Reilly's amazing staff at MSKCC who spent as much time as we did dealing with the insurance and pharmacy via telephone, email, and snail mail. It took alot of time and effort, but thankfully it all worked out and the upshot is that he is taking the lynparza, it is fully covered by insurance (including the World Trade Center Fund), it is dispensed and delivered at no charge to us, and it is working beautifully. His April CT scan showed marked disease regression in both areas of metastases (lungs and peritoneum) and the July scan showed even further regression. The peritoneal disease is practically wiped out, and the lung metastases are as small as they were five years ago when first diagnosed in August 2012. On the other hand (because there is ALWAYS another hand), he is noticeably more tired; still requires hydration via infusion (we have a visiting nurse to access his port; a company called Coram delivers the supplies and we infuse him at home); still has the occasional fall (caused by weakness more than anything else); has even less bowel and bladder control than he did one year ago; continues to suffer from occasional confusion and chemo brain; gets very little exercise, largely due to the fact that alot of his treatment and care is now being managed at home. Indeed, the cancer is so well controlled on the lynparza that I find myself gratefully thinking that our biggest challenges right now are typical long-term survivor challenges: keeping up his weight; dealing with cognitive lapses caused by treatment but made worse with normal ageing; reminding him that there's nothing intrinsically ghastly about having to wear a diaper (it saves alot of time and effort in cleanup); keeping him as fit and active as possible. In short: he's going to be around for a long, long time if his recent scan history is any indication - and so we are finally permitted to shift our daily focus from trying to gain control of his disease to keeping him as fit, strong, mentally agile and personally fulfilled as is possible within it's imposed constraints. 

The takeaway: genetic testing and tumor profiling may result in the discovery of a targetable mutation that allows for greater disease control. GET SMART and GO FOR IT. 

 

Thomas threw a punch at your cancer.
4 people sent you a hug.
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So glad you did the second testing and found treatment that is working! I am a firm believer in tumor testing and hopeful I will find my matching treatment. God bless
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Thank you, Betsy. I am sure with all the advances in testing that a targeted treatment will be found for your disease before too long. Fingers crossed; thoughts and prayers......💪🏽
Thomas likes this comment
Wow, what a battle. I'm so glad that you are finally able to make progress against the disease! Genetic technology is advancing so rapidly these days. I know he's still very weak, but that's got to lift your spirits. Prayers for continued progress!
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Thank you, Sterling. You were able to read between the lines enough to know that he really IS very weak and every day is still a challenge. But this new era of tumor profiling and genetic testing gives me alot of hope - and I just had to share good news with everyone here. Hope all is well with you! 💪🏽
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This is incredible news Susan! Good to finally hear that advancements in treatment continue to accellerate and help more people regain health. The fact is, most people don't have such a perceptive and effective advocate as you are. Best of luck to both of you as this story plays out in the future, and keep us posted. Love...Lucky
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Thank you, Lucky! I've been wanting to share this news for months and never found the time - proof that caregiving continues to take up so much of my time and energy. These new mutation-specific treatments really ARE game changers......but there are still side-effects to contend with. And we are extremely lucky that we finally got approval through a combination of insurance and the WTC Fund: most people might not have as many options as we did. Hope all is well with you! 💜💪🏽
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Well, forget the guilt...you DID share, and we're all the better for it. Yes, you are lucky in many respects, not the least of which is your ability to get things done, care for your man, and still find the time to write about it. And the two of you obviously share a lasting and inspiring love. Thank you both.
WHAT A STORY!!! And what a wonderful finale! More than 7 years out since diagnosis, he must be a figure for the record books! HUGS to you both!!
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January will be eight years since diagnosis. We actually thought he might be Dr O'Reilly's longest surviving pancreatic adenocarcinoma patient - but we found out recently that she treats a woman who is a ten-year survivor. Thanks for slogging through this post (which I just re-read and it put me to sleep!) XO 💜💪🏽
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Hi Susan: I am just beginning this journey. My father was just diagnosed with PC stage 4. there will be no operating at this point. 2 questions: What have you heard, if anything about sloan Kettering for treatment? and did you use any integrative/alternative methods along with the conventional treatments? Thank-you in advance....Helen.
My husband is treated by Dr Eileen O'Reilly at MSKCC. She is phenomenal. There is also another fantastic young physician there who occasionally steps up for Dr O if she is on vacation or traveling to one of her many international speaking engagements. Her name is Maeve Lowery. They are both superb clinicians as well as researchers. Good luck! I've blogged about our entire journey here at BFAC - so you may wish to go back and read some of the older posts. 💪🏽
I just love this post Susan. What you just discussed above is amazing and wonderful and proof that there are folks working very hard and long hours on making cancer a chronic, non-lethal, live-a-normal-lifespan disease. We still want those cures too. I'm so impressed with this second testing; perhaps there are now better ways of determining genetic markers than there were in 2010. I have so much faith in Sloan-Kettering. 😘 💐👏🏻
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The results of the second test really had us gobsmacked - and the more I think about it the more I realize that there must have been great strides made in testing protocols between the first and second tests, or else why would Dr O have suggested the second test? Never would I have believed seven years ago that he would still be here and we would be looking at the possibility of a normal life span (with pancreas cancer?!) but it seems that goal is within reach. All I ever wanted was for him to keep hanging on long enough for the researchers to stay one step ahead of his disease - and I think he's really pulled it off. I share your fervent wish that cancer become a chronic diabetes-like disease for all patients (although I agree that a cure would sure be nice!). Thanks for your always heartfelt support, Marcia. 💜💪🏽
Wow... this almost reads like a piece of investigative journalism. I had to put my concentration cap on to stay focused on your descriptive narrative.

Thank you for such an in-depth description of the background behind the treatment because I find it extremely interesting and like to follow the biology and chemistry of what is going on

I'm sure that is a welcome shift of concentration for you from battling disease progression to planning for dealing with a chronic condition and not having to worry so much about disease progression. That has to be a relief of sorts

Of course I also can't help but wishing I had pushed harder for further analysis of Emily's tumor and possibly a similar approach might have been utilized since although she did not have the surgery she also had metastasis to her lungs but be that as it may it is history and hopefully as you say others will also get the testing done so that if alternative treatments are available they can benefit from them

I am so happy for you. I know you still do not have it easy but it's a little less pressure knowing that so far the disease progression has been contained

I am sure that narrative took some work sometime some doing and I want you to know how much I appreciate the detail that you put into that

Thank you for telling your story your husband's story

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Yes, I wish others who had shorter lives had had the same opportunity we were given to have the tumor tested. It begs several questions: do they need a large sample (such as tissue from the Whipple) to do the tests? Why is such testing only offered once conventional treatments have ceased to be effective? I mean, suppose Emilee had the BRCA mutation? Did they do a lung biopsy on her? If so, was there enough tissue to test for mutations? If she had the mutation, wouldn't the first choice chemo then be something like Lynparza rather than the traditional gemcitibine-based options? All these "What Ifs...." Obviously, I feel grateful - but wonder why this mutation wasn't discovered earlier. It might have saved him many years worth of extremely debilitating chemo. We just put so much hope and faith in doctors, but I will tell you this right now: if anyone I know gets diagnosed with cancer I am going to tell them that the first thing to tell their oncologist is that they want their tumor tested for genetic mutations straightaway - because the answer to that question should guide treatment FROM THE BEGINNING of the journey - not only when all else has failed. Thanks for your thoughful comment, Neal.
I agree completely...the testing should happen as soon as the person is diagnosed
Wow!! That is really wonderful news!!
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Thank you! We are very, very lucky - and I'll never take that for granted. Imagine: feeling lucky to have a genetic flaw that explains why you had a predisposition to cancer because that same flaw also means better treatment options. Pretty bizarre!
What fabulous news, Aunty! *high paws* We are so grateful to those working tirelessly to find a way to help cancer fighters live healthier and longer while they find a total cure. We reckon that pretty soon the arsenal of cancer-fighting drugs will be so huge and powerful, that pancreatic cancer will be considered as a chronic disease that can be controlled for a normal lifetime. We're so happy for Uncle (and you). We are sending Uncle strengthening vibes and many face licks. Hugs! :*)
Oh boy! Face licks from my handsome doggie pal! Thank you, dear Thomas - I just want to cuddle you so much right now! 💜🐶💜🐶💜🐶💜🐶💜🐶💜🐶💜🐶💜🐶
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Thank you for sharing such detailed information regarding your Man's trials and tribulations in the world of personalized medicine. I am glad to hear he is having a positive response to this new treatment plan.
Thank you, Laura. My fervent wish is that these sorts of genetic profiles, tests and interventions become initial standard protocols for all cancer patients - or at the very least those with challenging cancers that typically don't respond well or for long to traditional chemotherapy. If my man's condition continues to improve, I see myself perhaps moving in the direction of advocacy on this point. Thanks for your continued support and comments! 💜💪🏽
Thank you for such a great post. This is such good news. I am so happy for the two of you. Being in a household dealing with appointments and chemo sessions I know how it can take over your life. But, amazing, I'm stunned, I'm beside myself. We are at the point that we are trying to live with it and still do the things we like to do when we can. Like today, we went on a scenic 4 mile hike along the coast of Maine. I think Roger is in better shape than me and the dog. I will try an upload a picture of the way he looked today. He's happy and healthy in many ways so life goes on.

I can't help but wonder, as I'm sure you are thinking about this too, how could thorough genetic testing be done with each patient sooner. Did you say your husbands first test was done at a for-profit hospital. It shouldn't make a difference. Did you know their test would be any different from what other hospitals test for. Did you know that a second genetic test was even an option. I'm guessing the answers are mostly no. They are analyzing Roger's tumor at Dana Farber but they said it was for research and not treatment. The doctor said it would also be useful if he is ever involved in clinical trials. They were clear with us that they will be looking for mutations. If found, they would offer our kids services for early detection. So is he saying he will only look at results when Roger has run out of options, and that only has clinical trials.

These are all good questions. We all have to work on it to be solved or improved. Yes, happy dance, I'm so glad for you.
The first test was arranged by MSKCC in 2012 and it was performed by a for-profit company called Foundational Medicine. It was primarily for research purposes, but we were told that we would be informed if any significant targetable mutations were found. We received a report about three months later showing no targetable mutations - and so we thought that was the end of it. My belief is that IF a mutation had been found our Dr O'Reilly would have tried to tailor and personalize treatment at that point - because she is a world-class researcher as well as a superb clinician. I think it really pays to be seen by a major cancer center, because they will always be thinking out of the box and be up to speed on the latest science. Dr O has always offered us new approaches - even when conventional chemo was still working. She offered a clinical trial of nivolumab in early 2014, but he was doing so well that we decided to pass. I really do feel that tumor testing should be made available and the results utilized immediately when making initial treatment decisions. I realize this is a very costly undertaking, so perhaps initially it should be made available for the most recalcitrant cancers. As for the second test by MSKCC, we had no idea that a second test was even an option - but Dr O'Reilly was astute enough to realize that advances in testing or advances in germline testing specifically made it worth the expense. And again....it cost us nothing. We simply allowed them to use anything they found for research purposes. Dr O'Reilly really kept our expectations low - said she didn't expect to find any targetable mutations the second time around, and not to get our hopes up. Well, you should have seen the grin on her face when she told us the news! Thanks for your update and insights, Deborah! 💪🏽
Wonderful news! Emsnana's gem treatment has quit working, and we are working on alternatives. She had the BRCA test and it was negative. We are now involved in a clinical trial at Emory for which we have a lot of hope. One feature of clinical trials I had not appreciated is that you get followed intensively by an expert! So at least someone is paying attention.
Yes, we interviewed for a trial at MSKCC in January 2014 and I was really impressed by how thorough they are in their care. We opted not to go ahead with it, because at the time his gemcitibine was still working. I'm so glad you found a clinical trial! Do you know what phase trial it is? Is it testing different drugs in combination? Is it immunotherapy? I'm so interested in the science, Laren: do keep us informed!
Best of luck, thoughts and prayers to you and Emsnana. I know how difficult caregiving can be, and you are about as supportive a spouse as I've ever had the pleasure to meet (even if the meeting is online!). Stay strong!! 💪🏽💜
It's BBI608, a team cell antagonist of some sort. It is still Phase I for,pancreatic cancer, but it has moved to Phase III for,other cancers. The good think is they already know the maximum dosages.
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"Boston Biomedical is focused on targeting cancer stem cell pathways. Its lead product BBI608 is in a Phase III trial in combination with paclitaxel in patients with gastric and gastro- esophageal junction cancer. The trial is scheduled to complete in 2017. BBI608 is designed to inhibit cancer stem cell path- ways by targeting STAT3, a protein that plays a fundamental role in converting normal cells to cancerous cells."
Sounds promising, Laren! Good luck!! 💜💪🏽
Susan, it always gives me "warm fuzzies " to read anything you have written. I am so glad your man was able to find a drug that suppresses the tumor. I am sorry about the fatigue. I know how depressing that can be. I was reading a post on lack of support after punching that little button saying 'I will support you". I feel so guilty but with each day the smallest things like reading can become overwhelming.
Hoping that life brings you a chair of bowlers or at least a bowl of cherries 🍒
Actually, Nana, I'm impressed by all the traveling and other activities you've managed to accomplish in the past couple of years while battling this beastly disease! I always hold you up as a beacon to my man: "If Nana can do it, so can you!" (I think he's just being lazy half the time). Good luck on your clinical trial at Emory - and your comment about the warm fuzzies really made my day: I live to make people feel good. Funny what you mentioned about a chair of bowlers, because about a week ago my father gave me an old bowler hat in gorgeous condition (made by Burberry in Britain) that had belonged to my grandfather and asked me if I wanted to sell it on ebay or donate it to a theatrical costume shop or something. Weird, right? Are you a bit psychic?
Great good luck, thoughts and prayers to you and Laren. Keep us posted. 💜💪🏽
glad the lynparza is helping some. Hopefully he will begin to gain some strength adventually. Atleast you got the testing done and found out somethings. God bless you both.
Thank you, Nancy. We are cautiously optimistic that his cancer may remain controlled; on the other hand, the side effects and general overall decline have me a little worried that we're not doing enough in terms of helping him to regain strength. Everything in it's own time, I guess. Thanks for your support. - and stay strong yourself! 💜💪🏽
Unbelievable! The advances in cancer treatment are so hopeful. Best to you & your man and for increased health and recovery. xoxo Lisa
Thank you, Lisa! (Everytime I see your beautiful photo I smile). You're so right about the changing cancer landscape: so many advances in so many different areas of research. We should all be very hopeful. Thanks for your continued support, and hope all is well with you! 💜💪🏽
Amazing news, Susan! I'm always happy to see an update from you and this is especially good news.

What an amazing doctor you guys are blessed with. Hopefully this is the future for all patients. Genetic testing and targeted therapy instead of a one size fits all approach. Hopefully the Hulk can start getting his strength back soon. Hugs to you both!
Thank you, Stefanie. We are indeed blessed to have the amazing Dr O'Reilly - a true healer in every sense of the word. Hope all is well with you! 💪🏽💜
if I understand pancan I have to have another biopsy which is difficult to do when the cancer is localized in pancreas. I was thinking about the molecular profiling? Is this essentially the same that your man had done? Dr. told me thay cant biopsy it either.
My guy had an endoscopic biopsy way back in 2010 before his Whipple. Did they really tell you that there is no way for tissue to be obtained? That doesn't sound right to me. But I'm not a doctor, so perhaps you should get a second opinion, Nancy.
they told me they could not biopsy it where it is located. It would be a great risk for me.
I was thinking about the molecular profiling with pancan. They need a new biopsy and they can not do one according to the doctors due to location and pancan says it is difficult to do also when localized to pancreas. Is this what your man had done, molecular profiling?
they also want tissue under a year old and mine is 2.5 years. I am so tired of everything and wish it would end but it wont.
Susan, yet another amazing post I missed from a warrior, but I don't want to miss now telling you how happy I am that your husband's cancer is on the retreat with the lynparza. I very much appreciate your sharing of the backstory and the biology. This sharing of knowledge invariably helps us help others, if not ourselves, on some inevitable day of need. Best of luck and patience in bringing your man back to better strength and health.

You are so amazing. I wish all cancer patients could have an advocate and caregiver like you at their side. I'm biting my tongue not to travel that tangent...But I know caregivers, like you, impact outcomes for those whose voices are debilitated.
Thanks for your comment. I felt instinctively - early on - that doctors treating patients accompanied by loved ones were more likely to go all out for these patients. "He belongs to somebody; he is loved and cherished" - a doctor can relate on a human level and imagine their own loved one in the same predicament. I really do believe it makes a big difference. I also confess I'm something of a control freak.....but perhaps that's been evident in my posts all along! Hope all is well with you. 💪🏽
Wow thank you for your post.
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This is amazing. My family history is full of cancer, and with my age they wanted to do genetic testing right away. Oddly enough, I tested negative for a long list of different genes, including BRCA-1. Hearing that your husband is still beating this awful disease and all the different treatment options gives me a lot of hope! I hope everything is continuing to look up for you guys. Managing side effects is a huge challenge for us cancer patients, but having an amazing support system like your husband and I have makes it so much more bearable. My family is constantly coming up with new ideas to help me feel better and that's a wonderful feeling :)
Thank you so much for responding to my post. One thing I can recommend is that you check and see whether the people doing the genetic test performed germline testing - because as I mentioned in the post and earlier posts, my husband's first genetic test came back negative for mutations, but the later test on germline cells showed a BRCA mutation. And this really can have therapeutic/treatment implications.
GOOD LUCK, CATHERINE!! 💜💪🏽
Susan, I just read on Deborah’s post about your husband’s fall and injuries. I’m so sorry to hear this and understand the despair. But I pray for both of you to see the rainbow that comes after rain. Best wishes for a full recovery. Xoxoxoxo
Thank you, Linda, Things are rough right now. Eight years of intensive chemo takes a toll physically, cognitively and psychologically - and despite his regressing disease, he is very fragile. Better days ahead, I hope.
Hi Susan, I am happy to read this blog post but also wondering how you are now. I commend your educational posts that can help others for years to come.
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CHEMO, CHIRPING GIZMOS, RICE & THE REST OF IT

It's hard to believe I haven't posted an update in six months - which I think must be some sort of record for me - especially since I continue to feel so present and involved here on BFAC. The stress of my man's continuing struggle against the inevitable decline brought on by both his cancer and it's treatment-related side effects has caused me to be as pressed for time and energy as I've ever been in my life. First things first, however (and thank you for asking): medically, I am stable - and my brain tumor has not grown since it was first diagnosed following a seizure on April 6th. My headaches, seizures and vision issues are all variously controlled and dealt with (although, to be honest, some days are better than others). As for my man, well.....what can I say? THE MARVEL CONTINUES. To wit:

January 8 will mark the beginning of year eight for us (he notches 7 years on the pancreatic cancer belt on January 7, 2017; diagnosis date: 1/7/2010). As I outlined in my previous posts, he was with me every step of the way through my own brain tumor diagnosis - even as he himself was declining physically and mentally. Dr O'Reilly started him on Onyvide plus 5-FU and, as of his September Ct scan, most of his lung metastases had regressed, and his peritoneal metastases had grown only marginally. I remember being thrilled to pieces at the time, while he was somewhat less so: "Why couldn't they all have regressed?". "Give it time" I replied - and I was right: his December Ct scan showed marked reduction in BOTH areas of metastatic infiltration. 

On the other hand, the 5-FU pouch proved difficult (even after that first period when I thought he had the problem solved by sticking the thing in his crotch: see previous post). I came home from work one day and found him on the bed with the pouch yanked out of the port, chemo leaking on the bed, needle exposed, pouch and tubes all tangled up with the phone's earpiece and wall-jack wires (yes, phone wires: he prefers wired to cordless in the home because it affords "better reception". It also, unfortunately, affords the occasionally cognitively-impaired an opportunity to get their chemo lines all entangled). Natch, I rushed him over to MSKCC where his port was flushed and the remainder of the chemo properly discarded, but the entire episode forced me to suddenly face the extent to which living with cancer and chemotherapy for seven years had taken a prohibitive cognitive toll. 

Earlier in the year, I had brought him to the MSKCC psychological counseling unit due to his wild, acting-out-his-deepest-fears sort of nightmares. He'd thrash about, claw at his own body and occasionally - inadvertently - take a shot or two at me (I learned to bob and weave quite well and never got injured in the way he injured himself, with blood drawn). The psychologist found these dreams, other occasional hallucinations and certain spatial impairments to be something possibly resembling lewy body dementia. They sent him to a specialist neurologist at Weill-Cornell where he had trouble, for example, creating a clock face and drawing ten minutes past six. On the other hand, he was always and uniformly skilled socially, oriented as to time and place, able to make executive judgments, etc. So nothing much came of it, and no definitive diagnosis has ever been made - even after the episode of the entangled chemo bag and tubes. He has the very occasional BAD COGNITION DAY (as we call them) - and so far we're really at a loss as to whether this is a bad case of chemo-brain or a mild case of dementia. The good news is that it doesn't seem to be getting any worse (and it gets alot better when he's on a chemo break), which leads me to believe it's the former rather than the latter. Time will tell - although I can share to my own chagrin and detriment the fact that he simply KILLS at Jeopardy and I don't stand a chance against him. Ever. 

Meanwhile.....as everyone on this website undoubtedly knows, year after aggravating year of chemotherapy can (in addition to causing chemo-brain) compromise one's immune system - yet we've been luckier than most in that my man never had any sort of infection during all these years of treatment. That changed on Monday, November 21. As is my usual practice, I phoned the apartment from my office that morning but (unusually) he didn't pick up. Okay, perhaps he went downstairs to retrieve the newspapers a little earlier than usual, perhaps he's on the toilet, whatever. So I called every 20 minutes or so - alarmed at first and increasingly frantic over the next hour or two. Long story short, I jumped into the subway and, upon arrival at home, found him sprawled on the bathroom floor, mired in his own poop. No bumps, no blood - but obviously on some level demented or deranged: he kept insisting "I'm fine. Don't call an ambulance." "Well, if you're fine, then let's get you up and cleaned off." "No, I just want to lie here for a while." I called the ambulance and later found out that what he was in was a state of DELIRIUM (all these "de-----" words to describe cognitive impairment) due to an acute infection - later determined to be the result of sepsis. We still don't know if he fell off the toilet, collapsed, slipped, or decided to take a snooze on the floor; however, there were no lumps or bruises that might indicate a fall. We'll probably never know.

We were scheduled to leave for New Orleans and a cruise on the Friday after Thanksgiving; indeed, it was to be our first real vacation in nearly two years. 'Twas not to be, however, and we spent eight days, including Thanksgiving, in hospital after I had the ambulance bring him to MSKCC's Urgent Care. Considered a fall risk, he had a full-time attendant and was extremely delirious the first three days - with a fever and very high blood pressure that seemingly came out of nowhere. I caught him literally having a conversation with the chirping gizmo that the fluid and antibiotic bags were hanging from, and it bothered him not one iota that "she" didn't trouble herself to reply (other than to chirp. There's a lesson here somewhere). On one occasion when he had to pee, rather than reach for the portable plastic urinal, he urinated into the rice pilaf on his dinner plate before either I or his attendant could intercede. When I inquired as to what, exactly, he thought he was doing, he said that the rice pilaf was not very good, and that it would taste better that way. Thankfully, the delirium faded after a few days, but naturally (given the chemo-brain, lewy dementia possibilities), I rather thought this hospitalization marked the beginning of the end of his life as a sentient human being. 

Overall, then, this has been a six-month period where I found myself so worn out physically that I was unable to summon the energy to blog, but where the good so outweighed the bad that it's not even close. With a nod to Khevin I realize only after setting this all down how much we have to be grateful for. Pancreatic Cancer diagnosis in 2010: ✔He's still here. Lung metastases in 2012: ✔He's still here. Peritoneum metastases in 2015: ✔He's still here. Brain tumor diagnosis in 2016: ✔ No deep-brain surgery; I'm still here. Chemotherapy, over the course of seven years: ✔He's tolerating it as well as can be expected, AND IT'S WORKING to shrink his tumors. We begin 2017, then, with the happy knowledge that we will continue to battle our health foes, work together as a team with our wonderful Dr O'Reilly, and, hopefully, maintain an attitude of gratitude and an ability to laugh at it all. (No, the pic below is not a Nike advert: see explanation).                                                                            

(Postscript: I figured out a perfect solution to the 5-FU bag problem and when I shared it with other 5-FUers in the MSKCC chemo suite, many of them found it useful. I hope you will, too. Purchase a really tight (my man is a medium, so I purchased a small) spandex compression garment like the one pictured in this post (any brand will do). This garment will hold the 5-FU bag and tubes tight against the body without any worrying about loose tubes, dropping the bag etc. The neck is high enough that the port and the tube leading into the port remain completely covered - so my man couldn't claw at the thing or pull it out during the night even if he wanted to. He keeps the garment on for the full 48 infusion hours and wears another shirt over it. Around the apartment, he actually likes placing the infusion bag lengthwise over his breasts and atop his (slightly protruding) belly; the first time he did so, the two chemo bag ends under the tight compression shirt resembled nothing so much as well-placed torpedoes - and I quipped "nice rack" to much hilarity). 

So that's what it's all about, friends, and the only way we know to get through the day: finding the humor and using the gift, the singular release - of UNABASHED LAUGHTER. Through conversations with chirping machines, rice pilaf with urine, nightmares, hallucinations, bad cognition days, chemotherapy, unhooked and entangled chemo lines, falls, piles of poop and all the rest of it; in lives that have proven to be very unpredictable, it is our one true never-ending constant. Of course we have - and will continue to have - setbacks. Even terrible ones. Nevertheless, it is my personal belief that uninhibited laughter has gone a long way toward helping us to achieve longevity and stability in a disease that, more often than not, promises anything but. 😀👍

 

Thomas, Pen threw a punch at your cancer.
4 people sent you a prayer.
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Susan I am so happy to hear from you as I had been thinking about you since you haven't posted in a while. You both are incredible humans and I am always praying for you both. I'm sure that it is your positivity and ability to make each other laugh that has brought you so far. Wishing you much peace and ease in this New Year! XO
Nancy, Stefanie like this comment
Thank you so much, Jane. I love the idea that I come off as positive, because I've always considered myself a "glass half empty" sort of person. You've made my day! 💜💪🏽
Laughter really is the best, maybe the only medicine...as you are proving every day. THANK YOU for this incredible account.

Wish I could give you a real hug...
I'd love a real hug....the cyber one will have to do. Thanks, Helen, for all your support and everything you do for all of us. I feel as though I get a chuckle a day out of your posts and constantly marvel "WHERE DOES SHE FIND ALL THIS FUN STUFF?!" 💜💪🏽
Great to hear from you. Your humor will continue to see you through this blasted disease. So happy you are both stable in the cancer department.
Betsy, your latest post took my breath away. So well-written and heartfelt, I actually felt I couldn't respond without reading it a few more times.
Thank you for taking the time to support us: I can't tell you how much we appreciate it.
Thoughts and prayers and positive vibes. Never give up. XO 💜💪🏽
Wow! I'd like to have a pair of nice torpedoes! As Reader's Digest used to say (still says?): Laughter is the best medicine! xo B
John likes this comment
My husband loves his damn torpedoes. And he's started saying that they're nicer than mine, the damn bastard! (They're not, by the way. I must be the only woman on the planet who actually likes her own boobs).
I wish wonderful temporary torpedoes for you (without the necessity of 5-FU chemo to accompany them, of course)! 💜💪🏽
I don't have torpedoes, but I do have a pair of nice AA or A cups, thanks to hormone therapy. And I may be the only guy on the planet who actually likes his own boobs‼️That is, assuming you're a guy who's got a pair. Not sure they're temporary -- but they're mine. I will admit, though, that the mammogram was quite the experience...
Fantastic! I think it's great that the occasional male preoccupation with boobs extends to their own. I mean, my man REALLY LOVES his torpedoes! XO
Bill likes this comment
Thank you Susan for this truly gripping update on the two of you. I needed to read it several times--so powerful were your words. I admire you both more than I can express. I'm so grateful to have laughter as my "major medicine", and your lives are such a perfect reminder of all the reasons for that. Thanks again for sharing this with us.
Laura, Stefanie like this comment
Your CURE pieces are always very inspirational, Khevin - and I actually keep a little stack of them in a folder. What an interesting and varied life you've had.....I feel as though I get a few more pieces to the puzzle with each entry I read.
Thanks for your support - and for your willingness to let it all hang out on the challenges of living with (make breast) cancer. You truly rock! 💜💪🏽
Sorry, meant "male" breast cancer.
Great hearing from you! I have early read your replies to others' posts, worrying about each little sign that things were not going well with you. I'm glad you're still in the ring. Emsnana is as well. We're taking a Christmas break from chemo and hoping things hold together. But we're headed toward two years since Stage 4 diagnosis. Individual days can be tough, but we're optimistic, and you and Rick are our heroes.
Aw, shucks.
Rick was my hero too - and I miss his sweet smile here all the time. I really love hearing from all the other pancreas cancer families - and it's so great to hear that Nana is enjoying a chemo break. I am writing this from chemo right now. We got a little break over Thanksgiving when he was hospitalized and in the immediate aftermath - and boy, was it ever welcome!
Hang in there, you guys! 💜💪🏽
Congrats to you Susan, and to the Incredible Hulk to be able to find times to laugh- very important. I love the story about the "piss-poor rice plate" - took that a bit too literally. On another note, besides the Hulk enjoying his man-boobs (needs a green bra?), the jacket outfit you show is very similar to what my wife puts on some of her special needs school students- and I don't mean that in a bad way, but as an observation. Wearing a tight jacket on their upper body, in some people, gives them a sense of calmness- so it might be worth a try if the doc is okay with trying that- until he turns into the Hulk and it splits? They even make a similar jacket for doggies called a "Thunder Shirt" - you wrap the Velcro jacket around the dog and it isn't as scared of lighting and fireworks where they used to go and hide under a desk in the basement. Keep laughing my friends- chalk-it-up to chemo brain and keep playing Jeopardy! MGBY, John
Stefanie likes this comment
So interesting, John. I can see where a tight but breathable garment might have a calming effect on a troubled child. It certainly works for us in terms of the chemo bag and tubes: he hasn't had any further episodes of pulling it out since I came up with the spandex idea. Plus he really likes carrying boobs for a day or two: I MEAN IT!
Hope all is well with you and family and baby-to-be, grampa. HAPPY NEW YEAR!! 🎉
John likes this comment
Dearest Susan...As always, your incredible writing skills have lovingly and thoughtfully brought us into your lives with all their inspiration and trial. You and your man are wonders of the world in my estimation. Hopefully your posts are cathartic for you, but know that you lift us all up far beyond what you might think possible. Love you both...Lucky
Well, you nailed it: they actually are cathartic. And everyone's comments really lift us up: we read and re-read them. I truly think that getting involved in the BFAC community and the pancreatic cancer community (through Lustgarten, PanCan, MSKCC and Hirschberg) has been a creative way to make lemonade out of lemons. It's such a pleasure, and it brings us both so much inspiration and hope.
Thank you Lucky! Happy New Year!! 🎉
Kevin likes this comment
Was going to "like" this, but can't...have to LOVE it! And you too.
Happy New Year amazing WOMAN! All you go through, it sounds so draining.. I just took care of my Mother this past week and had a poop episode.. It is so hard and I am not a nurse and I so appreciate the ones who are.. I swear I am still recovering, just so beat... and then on top of do it with a smile.. you two are so fantastic.. thankyou for sharing your journey .. you know you help so many Susan.. love you and pray for you both... Sabina
Thanks, Sabina. I have to admit: it IS exhausting (as you well know). Today happens to be a BAD COGNITION DAY and I am having to explain the simplest things over and over again. Your mother is so lucky to have you!
Take care of yourself, dear. XO Sue💜💪🏽
Wow. You are such an amazing woman. You have been such a blessing not just to me but to so many here at BFAC. And I don't know how you could think you are a glass half empty kind of gal. Trust me, you are not one of those. This post is proof of that to say the least. After all this time and you still find ways to laugh. That doesn't come from a negative soul. When I hear about other pancreatic cancer patients, I am so aware that I definitely got a get out of jail free card with mine. Don't know how I got it, but I never forget how lucky I am. Makes wish I could carry you and your mans load for awhile. Too bad we can't do that for each other. I hope you always remember we are here for you, just as you have been for us!! Hang tough my sister!!!!
You are definitely in good shape (if you have to get pancreas cancer) to have the neuroendocrine type tumor that you have. What's remarkable is your own attitude about it. Like my man, you don't complain, and consider yourself lucky. Does your family know how lucky they are to have you?!
Thanks for your continued support. You and the other more recently-diagnosed pancreatic cancer patients are the reason I began this blog in the first place. To offer hope and consolation, and to show that IT CAN BE DONE! You guys are all so awesome!!
HUGS! XO Sue💜💪🏽
Okay got a nuisance virus that keeps changing my screens and erasing my post. I am done for now. Fourth time I have started over. maybe I will have better luck next time. Susan I loved your post and brought back so many recollections of the 35+ years I was in the medical field. The rice pilaf being enhanced was the best besides the man we actually caught drinking urine out of a urinal once and let us know he was having a beer for the night. Take care and I will go before this gets erased.
OMG, Urine/beer! That is even better than our story! I'm sure you've seen it all, Nancy.
Thanks for offering your support despite your technical problems. 💜💪🏽
Keep laughing. It is great for your body and your soul.❤❤❤🌈
Susan J likes this comment
I like that! 💜💪🏽
Well that was a great deal of things that you and your husband have been through in quite a few years. I do not think I could handle all of it. So happy that you have such a positive out look on things. You must find yourself to be stronger than you would have ever imagined 10 years ago. God bless you Susan. I think the only thing that your husband may have a real problem with might be Kryptonite but I wouldn't put it past him to plow right through that too. It was real nice to here from you under any circumstance, I can't stand rice pilaf, he may have something there.. Hmm.. Lol. xoxo. Have a Happy and healthy New year.
It is such a true and insightful statement, Kevin, to say that I find myself stronger today than I ever would have dreamed possible ten years ago. Thank you for that!
Happy New Year to you, too. 💜💪🏽
Praying for strength for you and your man. My daughter had sepsis last year. She became delusional and had hallucinations off and on for several days. I hope you are able to get the support you need physically and mentally as you continue this battle for him and for you.
Thank you so much for sharing about your daughter. I can't tell you how scared I was that they were attributing his delusions and hallucinations to possible dementia when it all might be the result of sepsis and/or chemo brain. You've really cheered me up considerably, Laura - more than you can ever know. Stay strong, and Happy New Year! 💜💪🏽
I wasn't worried because I thought everything was just status quo; but now I see I should have messaged you. I don't worry about you falling into depression; why? Because you have too much going on to get depressed. With your schedule, you aren't idle long enough to think, and I think sometimes that's not a bad thing. It's the reason I don't get depressed or fearful of ca, I just keep on moving. But I do hope things settle down enough for you two to take a trip somewhere. And I'm praying the Lewy is not really Lewy but fake Lewy from one of the chemo rx's. I wish I lived near you, don't know how much help I'd be, but maybe some. Well, a new year, new beginnings. This cancer that's affected us all really is turning into the road that is NOT less travelled. Love you. God bless.
Thanks so much, Marcia. It sounds as though you know something about Lewys. Frankly, I had never heard of it, and then when it was mentioned as a possibility I found out that it was the devastating diagnosis given to Robin Williams prior to his suicide. I really don't know what to think. The symptoms come and go - and 95% of the time he's fine. But when it's bad......it's pretty bad. Then, two days later, he's completely fine and up to speed cognitively. All Docs agree that he doesn't have any of the Parkinsons symptoms usually associated with Lewy - and I am grasping at anything that tends to show we haven't been fighting pancreatic cancer for seven years only to end up with Lewys Dementia. Crikey!
I AM feeling pretty overwhelmed. I wish you were closer too! We both miss Northeastern PA and think about you and Joe often. Maybe once things settle down we'll find a way to get together....! Happy New Year! XO Sue💜💪🏽
I check in from time to time, looking for your comments and hoping all is ok. Great to hear about you and your guy! I'm hoping things go along ok for both of you. Chemo brain is all too real and the strong meds in it do a number on the bad but also the good. I'm almost 4 years out and even though I do all sorts of puzzles Andreas, words escape me and I wonder. Stay strong!!
Thanks for sharing about your own chemo brain. You really give me hope that his cognitive difficulties might be the result of chemo brain rather than dementia. The more I hear from others about their own experiences with chemo brain, the more hopeful I feel.
Happy New Year! 💜💪🏽
It's humor that lends it all dignity. We've missed your posts because they resonate. The story is universal and you tell it so well.
OMG. Your are absolutely correct. It is humor that lends dignity to the absurdity of living with a disease determined to wreak havoc on your cells and your very life. I'd been searching for this thought - this notion of humor and dignity - and I was nearly there. But you found it for me. Thank you, and Happy Mew Year.....💜💪🏽
Susan, you are truly an inspiration. Whenever I check in on the site I look for an update from you. It has certainly been a busy six months and I am happy to hear your own medical issues are currently stable. You are quite obviously a glass half full person. To look back at some of these scary situations and be able to find humor is amazing. Most people would be driven to depression. Heck, I'm still mad about pregnancy! I hope 2017 finds more stability for you and your man. More laughs and more hope. You deserve it.
I'm sure I've said this to you before, and if I haven't I should have: it is the younger cancer warriors I most admire. And those with young children? OMG: I don't know HOW you do it. A bit of humor, I suspect! Happy NewnYear, Stefanie. Taking the time to comment and support us means more than you know......XO From a couple of older folks! 💜💪🏽
Stefanie likes this comment
Susan...you and your man are always in my thoughts and prayers. I was wondering how you all were doing and though your life has been real hard, I'm glad to see there is some laughter and you're alright. Hugs...Lisa
Thank you, Lisa. You've always been so supportive, and I can't tell you how much it means to us. I hope everything is going smoothly for you health-wise and that you and hubby are doing well and enjoying life. Happy New Year! 💜💪🏽
thank you for your marvelous sharing and great injection of humor....i wish you strength and courage and a continued ability to laugh at the insanity and absurdity. I am finding that even after her passing, my dear wife continues to send me messages.....like a junk phone call where the recording says her name first....or a mistake on the program for her funeral service that had a typo for a date which just happened to be our anniversary....i keep laughing at these things...or when my wife got pissed and threw something...i could relate to your weaving and bobbing.... stay well and thank you
Oh yes - the insanity and the absurdity.....! I'm so glad you're able to continue to find the humor, even after your terrible loss. Your words give me a great deal of hope and inspiration, Neal. Thank you.
(I see we're both early risers).
Susan J we love you and your man. We love your humor in the face of "The Beast" and your beautiful, fluid writing. I will continue to keep you both in my thoughts and I'm glad he is still fighting. The rice pilaf comment was so funny and so something that my Dad would have said.
Well that's lovely Karen! I love the thought that something my man did reminds you of your wonderful father. Your support for us has been so constant and meaningful. Many times over the past couple of years - when my man has felt at his absolute worst - I have reminded him of how your Dad returned from the brink and lived to see a newborn grandchild and walk you down the aisle, etc. Thank you for sharing so many touching moments here - and I hope you'll keep checking in and maintain as active a role as you can bear in the pancreatic cancer community. XO
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Cancer Info

Pancreas Cancer

Adenocarcinoma

January 7, 2010

Stage 4

Yes

The uncertainty. And with Pancreas Cancer, the knowledge that there really is no cure.

Strong relationships get stronger

Lungs, 2012. Peritoneum, 2015.

Memorial Sloan Kettering

Hundreds of new treatment protocols are being tested in Clinical Trials as I write, and drugs offering better outcomes and improved survival hit the market frequently. Don't give up hope.

Unrelenting pain in the upper belly

Radiation followed first course of chemotherapy, and was given for 28 days in September 2010

I support the Lustgarten Foundation for Pancreatic Research; the Pancreatic Cancer Action Network; Memorial Sloan Kettering Cancer Center.

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