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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsMy melanoma nightmare update: One day you may have to make this very tough decision.
I just convinced my oncologist to stop my cancer treatments. I have given many updates about my cancer journey. I have stated it is a crap shoot when it come to cancer. Roll the dice and hope for the best. You have to decide what to do in the end along with your doctor.
I just completed my 13th treatment, I have 5 left. I knew the risks and benefits of my treatments before I started. I knew about the possible side effects.
I had side effects from day one. They were acceptable. Recently they intensified which is normal with immunotherapy treatments.
I was just informed the treatments are now effecting my thyroid. My doctor wanted me to continue with treatments, I have 5 left. He put me on a medication for my thyroid. I told him my body is saying I have had enough. The treatments have worked and now they are working too well. I told my doctor I believe taking the last 5 treatments may cause more harm than good. I was willing to take the risk to stop the treatments. He agreed.
Doctors know more than we do. At the same time, doctors are informed by medical trials and their experience. My treatment is the only FDA approved treatment for the unusual Melanoma I had. To put it simple, doctors sometimes don't have enough information at their disposal. My FDA approved treatment said one year of treatments. There have been no studies about 6 months of treatments. They don't know, 6 months may be enough. It takes many, many years before doctors get all the information they need
Now all I can do is let nature take its course and see if I made the right decision. Someday you may have to make a decision based on gut instinct and live with the results.
I also told my doctor I will be 64 years old soon. I may have 1, 5, 10 good years left, who knows. I am still in good shape except for the melanoma i just went through. I want to live normally as long as possible before everything goes to hell. That is exactly what I am going to do. As I am writing this I am enjoying a nice relaxing glass of brandy.
My doctor understood where I was coming from. He did not give me a hard time about stopping treatments.
hlthe2b
(102,217 posts)faith effort to be well-informed and you clearly have. I wish you the very best.
Irish_Dem
(46,899 posts)Sometimes the cure is worse than the illness.
So we have to make our own call when to stop.
Rebl2
(13,490 posts)I dont have cancer, but have already decided what my fate will be should I get cancer. You see, I have had rheumatoid arthritis since I was nine and multiple other medical problems along the way. Today I feel sick from the chemo drug I take for my RA. It is a small amount every week, but some weeks I get sick from it, other weeks I dont for whatever reason. I have been taking it since 1985. I also take many other medications. Some days I want to give up. What keeps me going now is my elderly mother in a nursing home. I want to be here for her. My husband understands my feelings and will make sure my my wishes are enforced should something happens. I also have a medical directive done through my lawyer.
Irish_Dem
(46,899 posts)I had a serious injury and the treatment was long term and very difficult.
If I ever get sick with something serious, I know what I am up against.
I will do a cost benefit ratio.
cilla4progress
(24,725 posts)Please keep us with you on your journey!
💕
Tetrachloride
(7,829 posts)and you gave way more than a little
Salute
niyad
(113,246 posts)such a decision for you. But I am glad that your doctor is being supportive. As is your DU family.
walkingman
(7,593 posts)FakeNoose
(32,626 posts)I believe you did the right thing, but stay in contact with your doctor. Even though you've decided to stop the treatments, he still should monitor your health. Melanoma is scary but the recovery rates are good when it's caught in time.
Thanks for your many posts on your progress. Best of luck!
fightforfreedom
(4,913 posts)I will continue to get bloodwork and scans done. Basically my treatments now become CT scans every 3 to 6 months.
DarthDem
(5,255 posts)Congratulations on your courage and your bravery. Enjoy the brandy!
sheshe2
(83,729 posts)modrepub
(3,493 posts)to see if you'd pick the right path. Not that I've been in this boat before, but it seems they probably would have recommended as you did but held back waiting for you to express your opinion.
Hoping you and your doctor have chosen the best path. Gentle crossings when the time comes (we all hope for that outcome in the end). Peace be with you.
fightforfreedom
(4,913 posts)Doctors always will want to continue your treatments as long as the side effects are manageable. My side effects are manageable with added medications. I choose not to do that because the side effects were becoming more intense. More medications were being added to control the side effects.
modrepub
(3,493 posts)I agree some doctors can't seem to admit when they are licked. I guess it's a good sign that they want to continue (at least they care, I hope).
I've watched/read my fair share of end of life care decision documentaries/articles to see our medical system hasn't come to grips with the fact that no one gets out alive. Best to stress quality over quantity. But I also am aware that there is a slippery slope for people who utterly lack the resources that a major illness presents to not get the care they need.
Johnny2X2X
(19,036 posts)And the 10 treatments already have likely done the job that 5 more wouldn't have done much better.
If the cancer is gone, the life expectance for someone who reaches 64 i2 still 19 more years. So you could have a solid 2 decades left, you made a choice for those 19 years.
Best wishes.
fightforfreedom
(4,913 posts)It was one treatments every 3 weeks for one year. 18 treatments total.
pandr32
(11,577 posts)Your decision will prove to be the right one for you.
panader0
(25,816 posts)You are the one who lives in your body and know how you feel more than they do. Sure, they are well
educated in medicine, no doubt.
I once had terrible leg pain and was able to deduce by my symptoms that I had deep vein thrombosis
in my right femoral artery. I went to the doctor and told him of my pain and symptoms. He had me do
a bunch of tests and said he would have the results in a week or two. In the mean time I started coughing
up blood clots--it had gone to my lungs and I now had a pulmonary embolism and developed a high fever.
I believed a stroke was close. Finally, when I went back to the doc, he said "You have deep vein thrombosis
in your right femoral artery. Exactly what I had told him weeks before. He prescribed Eliquis and the symtoms
went away. It was as close to death as I've been from a physical problem as I've ever had.
Pay attention to what your body is telling you.
Chemo is hard on your body. I think I would have done just what you did. Good fortune to you.
LAS14
(13,781 posts)Might I ask what the thyroid side effects were like experientially?
fightforfreedom
(4,913 posts)I felt nothing.
TNNurse
(6,926 posts)I remember when I wondered if 1 more dose of chemo (there were three drugs each time) would kill me. I was dehydrated, had passed out running to the bathroom with diarrhea and lay in the floor for quite awhile. I also lost 50 lbs.
It didn't.
I was 62.
I am now 73 and my husband and close friends know that if I get cancer again, I would take radiation, but no chemo again. I am grateful for what it did, but there are lingering side effects...every day.
I understand when people fight over and over again with fierce effects, but I also understand when people do not.
Glad you doctor understands.
PlanetBev
(4,104 posts)If you believe your body is telling you its had enough, then its time to listen. For all you know, you may have already beaten the melanoma. The truth is, even the healthiest among us dont know when their last day is at hand. Go on and continue enjoying your best life and keep us up to date.
DFW
(54,338 posts)At that age, my wife was diagnosed with a rare kind of cancer known here in Germany as the murderer, because it is never found until it has metastasized all over and it is too late. Hers was discovered by accident in its early stages.
After a brutal 5+ hour operation, 84 biopsies were sent off to measure the spread. After 3 days we got the amazing news. ALL were negative. The Surgeon gave my wife the option of no chemo. He THOUGHT he had gotten it all, but could give no guarantees. She hated her chemo from the last time, so she took the chance of foregoing it. She will be 71 this year and looks at least? 15 years younger. If that is of any comfort
.
fightforfreedom
(4,913 posts)Demsrule86
(68,543 posts)KatyaR
(3,445 posts)My best friend died many, many years ago of melanoma. By the time they figured out what it was (she had had a mole removed that was malignant and was never told to follow up), it was too late. I miss her still every day. Melanoma is a hideous disease.
i will be keeping you in my thoughts.
fightforfreedom
(4,913 posts)It was hidden, did not show itself. Once found, It had not spread which surprised doctors because it had been hidden for a long time. It was on my face right below my eye. I had a small cyst removed in the same area. I could have ignored it because it was small. The cyst was tested, it was normal. Then scar tissue formed where they removed the small cyst. They removed the scar tissue and that's when the melanoma showed itself. It was like it was dormant until it was cut into. My case should be a warning to all doctors, including dermatologists. Melanoma is more sneaky than believed.
mchill
(1,017 posts)I had to stop 2 chemos short of completion due to nerve damage. Eleven years later, I will never know if I had stopped chemo earlier to save myself from these long term side effects would I still be alive. On the other hand, my cousin had the same genetic cancer and she opted out of the chemo recommendation all together and she is alive 14 years later.
All these choices are just presented as population stats and each individual has to chose. I wish you well.
Wild blueberry
(6,623 posts)May every day be a pearl of a day. May you be well and happy.
Thank you for sharing your journey with us.
TeamProg
(6,110 posts)Richard D
(8,752 posts)Complex situation. The oncologist was shocked. The radiologist was shocked. But there was no detectible cancer in her body at all.
The oncologist said she needed more sessions, "just to make sure". After the first chemo her cancer came back far worse than before. It killed her. While I will never know, I feel if she had stopped then she would have had many more years.
fightforfreedom
(4,913 posts)That's why I call it a crap shoot.
Richard D
(8,752 posts)And hindsight is 20/20
Fla Dem
(23,645 posts)Sometimes those may be difficult decisions, and one where we may not be sure what the outcome may be, but sometimes we just know what's best for ourselves.
From your post you absolutely have weighed all the plus and minuses and have made your decision. I sincerely hope you have many, many wonderful, happy, fulfilling years ahead of you.
c-rational
(2,590 posts)NJCher
(35,650 posts)and giving us food for thought.
RussBLib
(9,006 posts)Treatments that work for some don't work as well for others. Some don't work at all for one person and work a miracle for another. That's one problem with having standardized treatments. I would not want to be a doctor these days with all the competing technologies out there.
I hope you do have several years of peaceful retirement. It makes working hard all those years worth it.
CaptainTruth
(6,585 posts)You'll be in our thoughts.
deurbano
(2,894 posts)was afraid the chemo had become more of a threat than the lymphoma. She is quadriplegic, and checked into the hospital for five days of treatment (which was supposed to be repeated every three weeks for six treatments total), but she rapidly de-conditioned, and had a lot of atypical side effects (due to her disability), so had to stay in the hospital for five months. In the first ten days, she developed her first ever pressure sore, which progressed to a dangerous Stage 4, and the chemo ultimately was preventing healing, which is why treatment was ended early. She also had to have a feeding tube, and other very challenging interventions... then recuperate at home for another few months. The pressure ulcer happened at UC San Francisco, a highly rated hospital, in spite of the vigilance of the nurses (though not the original wound nurse!)... and with such a long, expensive hospital stay, my daughter went through all her Medicare and had to rely on Medicaid, which meant they wanted to kick her out of the hospital at four months to an unacceptable (to us) facility across the Bay from our SF home... which we successfully resisted, since it was the pressure ulcer limiting her options. (The better after-care places wouldn't take someone with a Stage 4 pressure ulcer, and that also meant she couldn't go to the rehab facility we were promised... but the pressure ulcer was on the hospital, so we insisted they step up and find a solution, and they eventually moved her to a different UCSF hospital to recuperate enough to go home.)
At any rate, that was almost ten years ago, when she was 40, and she has been cancer free (knock on wood) since then. I have previously shared that last spring she returned to UC Berkeley after 25 years, and finally earned her BA in SW...and was appointed last fall by Speaker Pelosi to the National Council on Disability. She is very active in the CA Democratic Party (as a delegate, caucus chair and vice-chair of a committee), and serves on SF commissions, boards and committees, and in disability and domestic workers' rights organizations. She is deeply engaged with and enjoying life, in spite of spending most of her time at home these last three years, due to the pandemic. (She finished college remotely, and does most of her millions of meetings by Zoom.)
That period of diagnosis, treatment and recuperation was such a low point for our family (though we tried to stay upbeat for my daughter), and I was VERY worried when she had to finish the protocol early... but she has done amazingly well during these post-treatment years of her life. I wish you the same very positive outcome, with many more brandies (and other pleasures) to come!
[Just want to add (FYI) that I started taking thyroid medication in the fall of 2021, and I haven't had any negative side effects.]
renate
(13,776 posts)She sounds incredible! I love her can-do spirit!
deurbano
(2,894 posts)When she was young, I was told she would never be able to do much of anything, but the doctors were underestimating not only her potential, but tenacity.
That was a very tough year, especially since my younger daughter had just started middle school, and my son was a sophomore in high school. He has ADHD, and he kind of tanked that year, without me as available to provide scaffolding. My older daughter also has a speech disability, so one of us needed to be at the hospital almost 24/7 to make sure her needs were met, and the younger kids had sports, musical theater (etc.) every day after school, and needed to be dropped off/picked up (in addition to the other support they needed)... so it was a challenging time. My son eventually graduated from Oxford (where the selection is based on AP and ACT/SAT scores and interviews, not sophomore grades!), and my younger daughter is a third year senior at UC Irvine...so we all survived, but sometimes that definitely seemed in question!
renate
(13,776 posts)I'm feeling a little stressed about finding elder care but that's literally like a walk in the park compared with what you had to juggle. You didn't just survive... you all blossomed! If only you'd have been able to see the future... that would have helped so much, I bet. It must have been so difficult. Huge admiration for all of you!
deurbano
(2,894 posts)That's actually a main focus of my older daughter's current efforts: developing better longterm support policies (and funding) for our (rapidly) aging and disabled population... in conjunction with better wages, benefits and legal protections for the workers providing that support. There is already a dire shortage of these workers in the US, and with 10,000 Boomers (like me) turning 65 every day, it is only getting worse. So... my heartfelt best wishes for your search!
(It would have been helpful to be able to see into the future a bit!)
moonscape
(4,673 posts)to make a number of gut, educated but still gut, decisions. Im right now on a single agent therapy vs the 3-agent one my specialist wanted me on. Like you, it was about side effects, QOL, and also sadly economics. Affording a 1k/monthly co-pay for one of the oral meds I dont tolerate well anyway, made it a no-brainer. That said, still tough.
Youre so right about studies. Pharma conducts them but theyre limited and narrow. With one treatment, clinical experience found less is more when it involved a drug that was too cheap to bother investing trials to study. This is where having a specialist in ones cancer vs a general oncologist is invaluable, because incurable cancer is art as much as science.
Its a weighty issue, making these decisions for ourselves when there are no absolute answers and were left to do the best we can with what we know, and dont know.
My most surprising takeaway in my own cancer journey is how fiercely most oncologists respect QOL and our decisions surrounding it. Before cancer I had the mistaken notion that oncologists wanted to keep us alive at all costs, and it was heartening to discover that is not at all accurate.
NullTuples
(6,017 posts)I try to have my best faith in doctors because I know their patients' health and successful treatment matters to them. But as you said, they don't always have all the information they need. And over time, as more information becomes available, the protocols change. But in the end, it's up to each of us to decide what we want not only from our bodies, but from our lives as well.
Congrats on finding a good doctor who listens to you. I trust you that this is the right course of action for you, and I hope that you have many "good years left".
KY_EnviroGuy
(14,489 posts)I think we all have under the surface fears about our potential for cancer sneaking up on us in some form, and I certainly have mine.
Your post has reminded me that at 75, I'm overdue for cancer screenings for skin, lungs and colon. Pandemics are horrible in many ways, including delayed health care.
I wish you the best of luck with your long-term recovery.....
LittleGirl
(8,282 posts)Were the same age and I have severe reactions to pharmaceuticals and would probably stop treatment like youre doing. I support you and raise a glass to get well soon.
I wish you all the best and hope your healing goes smoothly.
2naSalit
(86,524 posts)As it should be. I hope it gives you as much time as you are willing to experience.
Mr.Bill
(24,275 posts)Off and on, it went on for over five years. It added a few years to his life, but I can't say they were quality years. Eventually, he died not from the cancer, but from the cure. The radiation destroyed his kidneys.
My wife, a retired RN says that wouldn't happen today, at least not that quickly because they use less radiation because they can target it better.
I honestly don't know what I would do if I was in that position. Hopefully I will never face the decision you are facing. I wish you well.
sprinkleeninow
(20,235 posts)lambchopp59
(2,809 posts)Unlike the first who I "fired" after 2 trips to the Emergency Room with profound side effects from treatments, he never responded to at all. Even the ED doc who left messages was shocked that Dr Moneybags never followed up on this, same ED on duty my second profoundly sick trip there, so he wrote me quite a bit more special nausea, antibiotic and antispasm Rx's to help than would be the usual SOP.
Apparently the first doc just can't be bothered from the golf course. He was all "conventional treatments or nothing"-- researched it to discover that was all 100 percent high $$$ profit motive on his part. Talked down to me like I was a dog.
I found this other doc, who explains everthing fully and bends the rules a bit to accommodate my medication sensitivity. This doc even personally calls to check on me. He knows I can't tolerate the treatments, so he does surgical alternatives. I have to drive far to see him, but it's worth it.
I'm also riding on possible making it till I qualify for Medicare, another year and 8 months. I have to go get labs again next week, it will give me a lot of info how to proceed.
TdeV
(156 posts)Hortensis
(58,785 posts)Glad to hear that you're in good shape.
But maybe keep a plan on the back burner for possibly living a lot longer than 1-10 more good years as part of your good living? Many cancer survivors are now, and those numbers keep growing.
Modern medicine advances that kept coming along and a lifetime of mostly healthy living meant that my aunt lived another 30 years, to 103, after beating cancer in the 1980s. She had an additional cancer that may or may not have been a recurrence later on that new treatment took care of. Happily, she was able to remain financially independent.
a kennedy
(29,644 posts)CrispyQ
(36,453 posts)You have to do what's right for you. Glad your doctor understood. Be well.
MLAA
(17,277 posts)I appreciate your thoughtful / insightful OPs and wishing you all the best and glad you are listening to your body ❤️
SouthernDem4ever
(6,617 posts)Ms. Toad
(34,060 posts)It is nerve-wracking not to have enough information to make solid, informed decisions. So you learn to do a lot more listening to your body and reading between the lines of case reports, small unblinded studies, etc.
There are a lot of folks who are using off-label vancomycin to treat my daughter's rare disease based on the observations of a pediatrician who noticed that it seemed to reverse the disease. There were perhaps a dozen kids she treated at various stages of the disease - with 100% response of some sort (the earlier the disease stage, the stronger response). Parents of kids with this disease fought pediatricians (and adult specialists) based on the strength of that insufficient collection of case reports to try vancomycin. Now that there are a few adult studies (about 15 years later) the treatment is slowly gaining acceptance. But the average time to death or transplant, at the time my daughter was diagnosed, was a decade. There wasn't an option to wait on more/better data.
On the flip side, I rejected radiation for my very aggressive cancer. The evidence is clear that radiation is absolutely best from a medical perspective when the cancer is found at the size it is typically found (golf-ball size). There are a handful of case reports regarding tumors the size at which mine was found (kidney-bean). There is a narrow window of time in which a radiation decision has to be made. So - no choice but to make it based on damage done by radiation v. a guess about how much difference it will make in long-term survival.
And even with well-known diseases, it's fine to choose quality of life over quantity of life.
My mother rejected chemo once for breast cancer and radiation twice. She's a quarter of a century past rejecting chemo and radiation for breast cancer, and a decade after rejecting radiation for her second bout with a completely different bout with breast cancer. She made those choices because she was not willing to put up with the side effects of chemo - even if it shortened her life.
Glad you are able to make choices, rather than just going with the flow - which is heavily biased toward quantity, rather than quality, of life.
ms liberty
(8,572 posts)And had chemo after a mastectomy. Cancer treatments suck and are just unpleasant as hell.
yardwork
(61,588 posts)NNadir
(33,512 posts)...diseases, they are essentially statistical exercises, and the course of dosing that recommended is somewhat a function of the nature of the subjects. It's not all sizes fit all.
It is impossible to cover all cases. In your case, it is entirely possible that 13 treatments are enough. There are surely also people for whom no number of treatments will work.
Cancer cells are very diverse beings, as fascinating as they are terrifying. I've had occasion in my work to play with some associated cellular biomarkers.
Melanoma has long been considered refractory. I personally know long term survivors, decades long, and I've also lost some friends to it. I've seen some interesting things on the frontiers, but I'm not personally involved in melanoma stuff.
It is a good thing you are making your own decisions while you can. From experience, I can say that it is very difficult for anyone to make a decision for someone else because that person is incapacitated.
I don't know about your personal situation and about potential caregivers who may be involved, but I would advise you to put some things in writing. When I had to make those choices for someone else, I would have given anything to have that, some guidance from the person, when they were well enough, about their wishes and intentions.
Death is the consequence of being born; the more we are born, the less death matters, I think. We can be born a lot, but die only once. I don't always succeed, but I try to be born every day, by seeing what I have not seen before.
I wish you all the best outcomes of being alive and may you be born many more times.
calimary
(81,200 posts)I wish everybody here good, sustained health and many pleasantly uneventful check-ups!
Stay strong and know theres a BUNCH of DUers here who are pulling for you.
flying_wahini
(6,589 posts)She also has done it her own way and gotten a lot of flack from her Drs for her disinterest in chemo. She fired them all years ago.
She is still terminal, still Stage 4 metastatic cancer. She was told 5 years ago that it could overtake her at anytime and to ready herself for dying. Yet she is still here. Yes, she is thinner and weaker but shes good with that. Almost everyone in her cancer support group are all gone.
Her continued optimism and mental strength has helped her so many times
Hang in there, remain strong. We are all terminal. Go live your best life. ❤️
Justice matters.
(6,925 posts)Few Americans are Aware of Links Between Alcohol and Cancer Risk
Alcohol is a leading modifiable risk factor for cancer in the United States and previous research has shown that most Americans dont know this, said the studys lead author, Andrew Seidenberg, MPH, PhD, who conducted this research while serving as a Cancer Prevention Fellow at the National Cancer Institute.
https://www.aacr.org/about-the-aacr/newsroom/news-releases/few-americans-are-aware-of-links-between-alcohol-and-cancer-risk/
BootinUp
(47,139 posts)except at holidays. Talk about a health benefit.
in2herbs
(2,945 posts)for cancers. I would suggest CBD in the day time and THC or CBD/THC combo at bedtime.
There's little info about it but after being on CBD I have been able to cut back on my Levo and Lio thyroid meds. CBD reduces whole body inflam, including the inflam associated with thyroid issues. And cancer is inflam. You will need to figure out how much. Luckily you can't overdose with CBD. Maybe one of the other DUers can help with the THC dose??
If you don't like that idea there's a mushroom therapy, Turkey Tail, that is effective for post cancer. I found the best brand on Amazon, and it's not expensive. It won't do for the inflam what CBD can do, but it's an alternative.
judesedit
(4,437 posts)There is so much info out there. Green tea is worth having a cup right now and many more during the day. Why not? There are many other suggested combos, also. I saw Manuka honey heal a bed sore my 103 year old mother had in a week or 2, literally. Nothing else worked. She had it for a couple years, from my recollection. We tried everything. It must have a factor of over 16. Take internally and use externally. Please investigate that. And enjoy every day. None of us know what time we have left.
Also, I hsd squamous cell carcinoma, had mohs sugery with skin grafting. When I went back for my follow-up appt, they were amazed at the rapidity of my healing. I told them I juiced every day. All kinds of greens, berries, apple. It works. Can only make you healthier.
fightforfreedom
(4,913 posts)You remove it if possible, treat it and then hope it never returns. That's where I am at now.
judesedit
(4,437 posts)Read the book of the same name. It can only help anyone who reads it.