› Forums › 2nd opinion and dad’s decision
- October 27, 2020 at 9:12 pm
Dad completed his TOMO SRS schedule the 16th. He had a follow up with lead Dr yesterday and was given 3 options.
1. Get back on yervoy/opdivo combo in another 2 months. I thought it might start sooner since the radiation will be doing its thing and you want the synergy effect.
2. Try chemo therapy
3. Start Hospice
The dr said that the first two options are high risk/low reward (he already had a bout of colitis with ridiculous regimen of steroids from yervoy/opdivo). Dr also said the first two options are not guaranteed to work and would not be a cure. Should we get a second opinion? Haven’t done so up until this point. We live in western Virginia so was looking at places around D.C.
The last option is the one I dread but see more likely as reality and would give him time to enjoy some of the things he would like to do. At first I thought the radiation might help more at this point but he is in so much pain, has trouble walking, and is fragile and has low memory retention. They just upped his pain killer meds which hopefully will help. I have gone back and forth between wanting him to keep trying and not pushing at all bc I’m asking him to continue to live with all of the pain. He is also tired and has made statements that he just wants to rest. I am very torn, crying pretty frequently, and not wanting to lose my best friend. I want to be able to let him go if he wants to.
Forgot to mention the TOMO was for mets on bone spine.
- October 27, 2020 at 9:13 pm
ThinkingPositiveParticipantHello Evan, I understand your situation is hard, I’ve just been through it in September with my dad, age 93, who had a different health issue. The whole family was involved in the decision. For me, I had to know all the fine details, such as length of recovery and likelihood of a good outcome. I listened to what my dad wanted, which was to not have treatment and to go home. My dad told us he lived a happy life and was ready to pass, and wanted to be at home. That was what we honored.
- October 28, 2020 at 9:14 am
The age and complexity of the health condition, quality of life, as well as the patient and family’s wishes, are important to take into consideration. I wish you strength and stamina through this process with your dad. My heart is with you.
ThinkingPositive, thank you for sharing you’re experience with your father. My father is 75 but has had many health issues over the last 10 years. My mother seems to think the best option might be to not get treatment and maybe he will have more time to enjoy in comfort. I am still 50/50 but will respect his decision.
- October 28, 2020 at 7:41 pm
I wish you strength and future health. My heart goes out to you.
- October 29, 2020 at 12:57 am
Am sorry for your father and you. It’s hard for me to help since I am not a doctor, and I try to piece together the details of your father’s case from this post and your earlier post.
I am not sure what is causing the pain – I fear its the mets to the spine but do you know for certain or is it something non melanoma related?
On opdivo (nivo), its unfortunate this gave him colitis – its usually well tolerated: ipi (yervoy) is usually the main problem
I dont agree with your doctor’s assessment that option 1 is not a cure. For some of us (around 40 percent) it does seem to be a cure, although those “cured” may never know that they have been cured. So there is a huge potential benefit although the chances may be 40 percent or lower. For those of us for whom immunotherapy does not work, then there are clinical trials and other treatments (TILs etc). If you read bubbles / celeste’s blog search for her primer and you will get the details. All of this can be an effort though and depends on your father’s underlying health condition.
I do think they might have tried immunotherapy earlier though, and I disagree with option 1 assessment (and also that the doctor does not seem open to trials). So I would get a second opinion and this is why I am writing since I am treated in DC.
I can recommend Dr. Rapisuwon (washington hospital centre) and the doctors at Georgetown (atkins and gibney). Rapisuwon’s treatment plan turned me from progressive disease to (apparently) NED. Rapisuwon was also ready to consider new plans if his plan failed.
But for my second opinions I have seen Dr. Evan Lipson at Johns Hopkins – he has a clinic at Sibley Memorial Hospital in DC. He has never treated me but I found his explanations and advice clear and he seems caring and took lots of time for me. My strong advice would be to arrange an appointment with him (or Rapisuwon) and see what material you need to send him beforehand. Maybe you could see Rapisuwon too if you make it up to DC!
Good luck and hope you make it to DC
PS I think you said your father was not BRAF positive – is that correct or they didnt biopsy and check (they should have!)
- October 29, 2020 at 1:22 am
He has a couple compression fractures due to the spine bone melanoma. His left kidney was also inflamed but the drs didnt determine what was wrong with it (he was a horseshoer at one point and was kicked in the back, twisted the kidney). Pain probably caused by the mets and/or radiation kicking in. I think it was the yervoy that instigated the colitis, he had been on opdivo only for atleast half a year before the combo.
I am going to look these dr’s up. I was looking at John Hopkins earlier. I wonder if i can go meet with the doctor or if my dad has to be present as well. He is pretty much bed ridden due to pain.
They did biopsy and was not BRAF positive.
Thankyou for your second opinion suggestions, I wish i had found this community earlier!
- October 29, 2020 at 3:35 am
I think second opinions are good ideas, I did this twice ahead of difficult decisions. I think you just have to ask the various doctors ahead of time what info they need and whether they must have your father present. If its with you only, Maybe they will offer to consult over the phone (you would have to pay of course, or your insurance).
Lipson is at Johns Hopkins but he does spend time at Sibley. He’s not my doctor but he took time and I need to thank him. The others have been my doctors and Rapisuwon my current doctor. If you go to UVa you should also be OK but make sure you see a melanoma specialist. Fairfax INOVA is probably good too. It may just confirm your current options (but again immunotherapy can have permanent benefits, just not for all of us) – but even that would be useful information to know. Or it may give you and your father new ideas.
Good luck Mark
- October 29, 2020 at 9:58 am
He goes to UVa and sees a melanoma specialist. I think the dr was saying that retrying the combo immunotherapy would most likely repeat what happened the first time where it was very successful for 9 months but then the cancer returned, so would not expect a second try to cure. I was hoping having radiation ahead of time and no colitis interruption might make it so he can stay on immunotherapy longer after the 4 combo doses.
I sent a request to Lipson so am hoping to hear something via phone or email soon.
Thank you for your advice
- October 29, 2020 at 11:57 pm
Am glad you will be checking out Lipson and hope it works out. Both times I met him he was informative and courteous. Even if repeating what my other doctor told me, it helped to hear it a second time. Plus he gave me some new ideas, which my doctors were willing to try. So either way, its a good idea.
In terms of your father’s case:
– I agree with Edwin that reducing the ipi (yervoy) may really help reduce the risk of colitis, so immunotherapy again could be a possibilitiy
– On diet its up to your father. I did not change my diet too much and actually ended up eating more meat than before my diagnosis (sometimes i was near anaemic). Still I like the idea of eating more yoghurt (I stopped doing this but I think I should), also I take vitamin D. Improving diet cant hurt and this stuff on microbiome probably means diet helps (rather than taking a probiotic tablet). So I would try to make changes at the margin.
– If immunotherapy gives you stable disease or slow progression that can be a victory
– if immunotherapy is not working then can a trial provide an extra kick? For me tvec helped make the immunotherapy work, but my tumour burden was low. There may be another trial available – adding something to nivo or pembro to give it a kick (recognizing that ipi may be too much for your dad)
I hope your father is on board with all this. Nivo plus something may be relatively tolerable. I hope that something else can reduce his pain.
Good luck I hope Dr. Lipson will see you and it proves useful
EdwinParticipantMy 1st Yervoy/Opdivo infusion gave me very bad diarrhea and I lost too much weight. I needed 9 weeks to recover before my 2nd Yervoy/Opdivo infusion. My oncologist reduced the dose of Yervoy by 50% for my remaining Yervoy/Opdivo infusions and I my side effects were much less with my 2nd, 3rd and 4th infusion.
- October 28, 2020 at 8:58 pm
Can your father receive Hospice care and immunotherapy?
He is on Medicare in Virginia so I don’t believe they offer it, would be nice if that option was the norm rather than the exception. My father’s colitis occurred a month or two after the last treatment and he was tapering off the powerful steroids from October through December. I’m glad they were able to finish your infusions and the doctor was able to use less Yervoy at his discretion.
- October 29, 2020 at 12:32 am
Does anyone have any experience or knowledge about trying Opdivo/Yervoy for a second time? A schedule they gave my father and mother indicated the combo treatment wouldn’t start until early January which seems far away. Have read about radiation working with immunotherapy but should be done shortly after radiation <4 weeks.
- October 29, 2020 at 2:00 am
I really feel your pain. I was in the same situation 4 years ago. I would do anything for my dad. I myself have melanoma now. Back then my dad was diagnosed with stomach cancer. There was time when he was getting chemo and radiation. Doctors wanted to shrink his tumor before the surgery. He could not eat anything or drink anything by mouth. He was getting his tube feedings as a main source of food. We were adding water as well as a second line. He was not tolerating the formula he was getting first. He has IBS. Nobody looked at him as patient who has IBS. He was in and out of the hospital. They were saying he is just weak. At one point he got CDiff infection after one hospitalization. It is an infection in guts with lots of diarrhea. Doctors said he was done. They offered hospice. I took medical leave from my job to take care of him.
I noticed the formula he was getting when he was in the hospital was much more tolerable by him. I asked to give him the same formula at home. Slowly he was getting better with that new formula and my stubbornness.. We treated his CDiff with antibiotics. He got better. .His doctors were surprised he made it. After couple months I brought him back. They did blood work. It looked good. I asked them to look at his blood work, his heart, kidneys, liver and tell me if the there is a reason they would refuse to do the surgery.. They agreed to do surgery. He is still around. He had several surgeries and couple rounds of chemo. He eats by mouth now regular food. He still enjoys his life and they have nice routine going in their house with my mom His doctors are my doctors now treating my cancer.
Back to your father now.
What I would do if he was my father. He needs a lot of GI support. I would put him on that formula he had when he was on that tube feeding. You can drink it, it doesn t have to be through the tube in the stomach only. It has everything you need to survive. It has vitamins and minerals and it has probiotics and guts support it was perfectly acceptable for a person with IBS and it seems like that’s what people need going through immunotherapy if they are weak. It sorts working the same way. You need to have specialized nutrition to survive this blast of attack. The nutritional formula was Jevity 1.5.
I would put my dad on it and keep doing that immunotherapy. The radiation should take care of pain. . I would avoid meats at all cost and preferably keep him on this nutrition for a while and see how it goes. My dad didn’t t have formed stool on this formula but he didn’t have diarrhea either.
I will drink this formula myself if I get colitis on my immunotherapy. I just started it. It is hard to say yet about side effects.
What I learned throughout my dads cancer and my cancer that guts health plays major role in your survival,
I dont eat meat. Only occasionally an egg or bison liver. I eat lots of fermented food like Sauerkraut I make myself. I make cottage cheese myself and add flex seed oil there.. It didn’t cure my cancer. It did cure my hypertension. I am off my 2 pills for hypertension.
Talk to your doctors before you do anything..
I know we are here pretty stubborn folks and would go through a lot to live little bit longer on this earth. He may not want drink this crap and would want enjoy his burger and it’s ok. You will be there for him no matter what you guys decide. I learned that doctors play important part in your survival so do us. We are equal partners.
Love and hugs.
MelMelParticipantI agree with the prior posts. Get a second opinion and with everything going on, you may be able to do that over Skype and avoid travel. Of course, you will need to have the pertinent health records forwarded ahead of time. There is absolutely no shame and you are only doing your best.
- October 29, 2020 at 6:23 am
Another aspect that you can look at and change immediately is his diet and I speak from personal experience. Prior to being diagnosed with stage IV melanoma I was deathly ill. My energy was extremely low, I felt mentally and physically exhausted and I would mostly just sleep, not to mention that I looked like the walking dead. My skin was gray and I had sunken eyes. I literally avoided looking at myself in the mirror because I was terrified at seeing my own face. The only thing that saved me was a drastic change in my diet. My youngest daughter, who lives in Europe suggested Gerson Cancer Diet. I, along with the rest of my family decided to give it a try since I would not last long the way I was. Besides, what do I have to lose? Within two weeks I felt 1000% better and I had much more energy, was more alert and so much more like a living human being. I highly recommend it. I never got on the complete protocol because it is extreme but I am a living proof that it works even on limited protocol. Basically you eat organic fruit and vegetables and juice. You avoid salt, protein, fats and sugar. The concept is only to ingest nutrients that your body requires to heal and nothing else, meaning if it has no nutritional value you do not eat it. Only drink distilled water. Do coffee enemas. There are a few supplements you need to take but I took my own supplements suggested by my naturopathic oncologist who is a full fledged medical doctor. There is a book and it details few melanoma cases and one case had metastases in neck vertebrae. The full therapy is two years(after which you go on a less strict maintenance diet) however, I again state that you are in the driver’s seat. All you need to do is get your dad to feel better and regain some of his strength while you are deciding on conventional treatment.
During the last few years, I have lost many dear ones to different diseases and my motto is as long as there is life, there is hope. So please, do not give up and remain positive. I strongly believe, if there is will, there is always a way. This group is excellent because it has caring people with vast amount of varied experience.
Hugs to you and best healing wishes to your dad.
- October 29, 2020 at 8:46 pm
Thankyou for your diet recommendation. He is pretty stubborn about having meats. He does like fruits and salads so he would enjoy that part of the diet. I think he could get used to it. At the moment I am the third wheel in the decision triangle. My Mom was with him when they saw the doctor on Monday to get the recommendations, would have liked to be a fly on the wall. We are still in the decision making process but my dad is in a lot of pain still, they are adding another morphine pill for his regimen. Since he has some compressive fractures in his back he lies down most of the day so his mental health is suffering. He cant do much of what he likes to do.
Thankyou for your positive message, and best wishes for you.
Gene_SParticipantI don’t know if your parents would do this or not but we used to take a small personal recorder with us and asked the doctor if we could record him since it is not so easy to remember everything he said and this way we could listen to it again or let our daughters hear what was discussed at that particular visit.
- October 30, 2020 at 1:48 pm
I hope this might could help.
Judy the loving wife of Gene – Stage 1v and now NED for over 8 years – Ipi (Yervoy) 10 mg/kg and GMCSF daily self injections
Judy, that is a great idea. Today I ended up calling and spoke with a nurse to get the overall summary. I got a better explanation of the risks/reward for going on the combo again vs starting hospice. Unfortunately because of my father’s various health conditions, age, previous colitis episode, and the advancement of the disease the chance of successfully preventing progression was pretty low. Also they said that it had no chance of being a permanent solution. I still might try to convince dad to get a 2nd opinion, already got the paperwork, but I mentioned it to mom and she said he would not want to. Have to talk to them about it in person. I’m starting to accept that hospice is probably the best option at the moment. Been a rough few days since the news and it is so emotionally taxing, from crying, anxiety, fear, regrets of the past, uncertainty of the future. Gotta try to stay in the moment though. My heart goes out to anyone or any family member/friend of someone with this disease. Hugs for all.
- October 30, 2020 at 7:28 pm
Thanks for sharing your experience with your father. I am glad he is still enjoying his life with you and your mother. So sorry that you are fighting melanoma, I hope the immunotherapy shows positive results soon.
- October 29, 2020 at 9:44 am
I think one of the main reasons my father got colitis was that he didn’t pay attention to his gut health. I don’t think he ate cultured yogurt or cottage cheese, definitely no probiotic supplements. He also enjoys meat, was on a somewhat modified Atkins diet before cancer. I am going to look into the Jevity 1.5. I dont think he will cut out all meat but would atleast work on his gut health.
Thankyou – hugs and hope
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