› Forums › Caregiver Community › Husband diagnosed 7/17 with Stage IV Advanced Metastatic Melanoma
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skfitz.
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- December 1, 2018 at 9:23 am
Hello, I am so glad I found this site, njust looking for some moral support, and people who are going through the same thing, and seeing what else is out there, and what to expect. My husband was home ill for 2 weeks with what we thought was a terrible flu, when he still wasn’t getting better he was sent to the ER where he was diagnosed 16 months ago at age 62 with Advanced Stage IV Metastatic Melanoma and was just sent home. His liver was full of cancer, his lungs, 5 areas in his bones, his thyroid, stomach, parotonial cavity, and some lymph nodes. We were devastated to say the least and didn’t know what to do. We were blessed that a friend recommended and we were able to get an appointment with Dr. Steven O’Day at John Wayne Cancer Institute in Santa Monica, CA and he said if you do nothing he will die in 3-7 weeks. We could not believe what we were hearing. Then he said but we can turn this around, and it is going to get worse before it gets better. All this has been true. The 1st 3 months were extremely scary, and I thought it was the end. He was started on Opdivo/Yervoy, but after 2 treatments he couldn’t handle the treatment and was put on just Opdivo, and this still wasn’t working. He was hospitalized 3 times for a week each and his kidneys were failing, rapid weight loss, couldn’t eat. During his 2nd hospital stay he was put on Taf/Mek as well, and still we were expecting the worst. The 3rd hospital stay finally they found a blood infection and he was treated for that, and given steroids which turned out to be his miracle drug. Within 3 weeks he was back to work full time. He stayed on the Taf/Mek for 6 months, then they wanted him to try just Opdivo. He stayed on steroids for 1 year, every time he tried to come off them he would get really sick and need to go back on them. He has now been off the steroids for 6 weeks, and just on the Opdivo. He has been on morphine, and is slowly trying to come off this as well. He is always tired, and has constant pain in his abdomen, but he still is able to go to work. He has good and bad days, but we have learned to live in the moment and never take a day for granted. His latest scans after 15 months show no evidence of disease. I don’t know how that is when he still has a lot of pain, and severe inflammation and swelling, but my husband for now doesn’t want to go back on the steroids. He will be having all his scans this month and I pray he still has NED. The Dr. has said a few different things. 1) If we need to we are lucky we can still re-introduce the Taf/Mek. 2) If we need to we can re-introduce the steroids and up his Morphine as well. 3) They have also said that in 3 years if Opdivo is still working they will then stop it. I am very scared about the unknown, and don’t want to give up the Opdivo, I feel it’s our only thing that is keeping him here with me right now. I don’t know if after a while it just doesn’t work anymore. I don’t know how long we can keep the Melanoma under control. Is anyone out this far and have any words to let me know what may be coming in the future. My husband does not want to reach out to anyone and talk about his Cancer. His feelings are all over the map. I’m so glad I found this site, I have been on the caregiver site for about 1 month, but there is so many more people and so much more information on here. I look forward to Sharing and learning from and with you all.
Michele
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- December 1, 2018 at 12:15 pm
I am new at this however learning quickly. Currently I have just finished my 2nd Yervoy/Opdivo treatment. Although I believe in the immunotherapy, I feel that I need all the help I can get so I have chosen a few natural ways not necessarily to get rid of melanoma but if they help me keep side effects of immunotherapy in control, including protecting my organs I will be extremely greatful. To help with pain and inflammation I use CuraMed- Terry Naturally Curcumin 750 mg. Although expensive ($110 for 120 capsules) but worth every penny. I had severe back pain related to my liver and was unable to move my complete right arm prior to taking this and the relief was almost immediate. It's a highly concentrated version where one pill equals 500 regular pills and for normal use you use one tablet daily however, cancer patients can use 6-7 tablets per day. Personally I use 6 (3 in the morning and 3 in the afternoon). I also use Thorne Boswellia Phytosome (Frankinsense- 3 capsules daily, $51 for 60 capsules) which supports GI, joints and respiratory support as well. You can get both online.
Best of luck,
Melanie
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- December 2, 2018 at 4:17 pm
Melanie, Thenk you for the reply. My girlfriend is also on the Gerson therapy for ovarian cancer. It had helped her for 3 yrs. she is now on Gene Target Therapy at UCLA, thank you also for all the information on the alternative medications. I will look into those online. I can see I have much to research, but I am not opposed to having my husband try anything to help with his pain. These supplements are not adversely effecting your labs?. Have you tried CBD oil, I have many friends suggesting that as well, but know nothing about it. My prayers are with you as you start this journey. ENJOY every moment of life.
Michele
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- December 3, 2018 at 6:25 am
Michele, Gerson claims best success rates with melanoma and lymphoma of all cancers. Regardless, Gerson helped me tremendously with detoxing my body and changing the environment which brought on my melanoma in the first place. Within just two weeks I felt a 1000% better than I have felt in months or even last year or two. I have visited a Naturopathic Dr Board Certified in Oncology, plus a medical Dr. who incorporates naturopathic cancer and alternative therapies as well as my regular melanoma oncologist at U of M, Ann Arbor, MI. All three agreed that the supplements I am on will not interfere with my immunotherapy. In addition to Boswellia and high dose of Curcumin, I take alpha lipoic acid, milk thistle extract, CoQ10, mega sporebiotic, GI Detox Binder, Essiac and Avemar. My oncologist's only concern was that Gerson diet may make me weaker during treatment however I found out that in practice the opposite is true. I feel and look better than I have in months and my weight loss has stabilized. I no longer have pain nor inflammation, no nausea nor vomiting and my side effects of immunotherapy thus far are occassional tiredness and a very mild skin rash. My oncologist told me my bloodwork is "perfect" and that I may be one of the lucky few who remain severe side effect free following my immunotherapy. I have heard from cancer nurses about CBD oil which you must request from your oncologist, place few drops under the tongue and apparently it helps with pain and nausea. I am scientifically trained and believe never to place all eggs in a single basket, but rather choose a few proven and tried treatments from those who have beaten cancer and apply them. We don't need everything we try to work, however as long as we end up with a higher percentage of success than the one we started with, we are good! It's not easy and whenever times get tough I simply ask myself, " Melanie, do you want to live or die?" The answer instantly becomes crystal clear and gives me the strength to carry on, as there is no alternative. Of course, if something is no longer working, remove it and try something else. Even if only a single thing works, it will be a success and a step in the right direction. After all, if Dr's had all the answers we would not be here.
Hope you find what works for your husband.
Melanie
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- December 5, 2018 at 5:29 am
Melanie, thank you for your reply. that is good news to hear that your Doctors agreed that the supplements are not interfering with your immunotherapy. I would think the Gerson diet once able to eat more food would be a healthy choice of eating. I am trying to do my research on everything I can, for if things stop working we can move on to something else.
Michele
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- December 1, 2018 at 3:39 pm
Hi Michele,
I’m sorry for everything you and your husband are dealing with. Some of his symptoms sound like they could be related to steroid withdrawal or low cortisol. Has he had his cortisol and ACTH checked? If he was on steroids for an extended period of time, he could have impacts to his HPA axis (most dedectable in the pituitary and adrenal glands). Yeroy can also cause similar side effects.
I have had similar symptoms to your husband’s and they have made me feel worse than anything else I have experienced on this journey, including helpless. So I definitely empathize with you both.
BFL
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- December 2, 2018 at 4:27 pm
BFL, Thank you for your reply. I have not ever heard of steroid withdrawal, and I have never seen Cortisole, or ACTH Results in his lab work. He Hs treatment this Tuesday, I will ask at this time about testing both of these. Thank you so much for the information. Where did you start in your journey, and where are you now I pray you are doing well on this crazy journey. EnJOY every moment of life.
Michele
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- December 1, 2018 at 7:23 pm
Hi Michelle, The Rockstar (Dr. Stephen J. O’Day) saved my life . I did similar treatment as your husband minus the taf/mek. I’ve been on steroids for three years. Been NED 2.5 yrs. Still have aches and joint pain two years after treatment. I to will have scans this month. Hoping your husband stay NED forever! Best, Paul-
- December 2, 2018 at 4:35 pm
Paul, Thank you for your reply. I agree. Dr. O’Day is the best. What dose of steroids are you on? Congratulations on NED for 2.5 yrs that is amazing news to hear. We are so praying my husband can stay NED for that long or longer. I pray your scans still show NED. EnJOY every moment of life.
Michele
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- December 2, 2018 at 8:21 pm
Michele, I’ve been as high as 100mg. To combat high liver #s and am tapered down to 2 mg. CBD oil has helped with appetite,pain and nerves. Meloxicam really helped when tapering down steroids. Still trying to get an appt. Maybe on Tuesday who knows! Best, Paul
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- December 1, 2018 at 8:55 pm
Sorry for all that you and your husband are dealing with. Fatigue it is a common and persistent side effect of immunotherapy (even Opdivo alone). Many, as Paul noted, take prednisone long term to help symptoms. Additionally, we know that immunotherapy can wreck havok on our endocrine system and problems there often present as fatigue. Making sure thyroid and cortisol levels are where they need to be can be done with a simple blood draw.
Many melanoma patients cannot tolerate all four doses of the ipi/nivo combo. BUT…the good news is….they often have excellent results by proceeding on nivo alone. Here is some data you may find reassuring: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html
Additionally, though your doc and you and your husband are the ones to decide…melanoma experts are leaning toward treating folks with immunotherapy for only 1 -2 years…especially if they are NED. Treating longer has not proven to do any good, but does increase the risk for the development of more side effects. There was a discussion of that on this board just a bit ago: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/when-stop-immunos
As to supplements. That is a tricky subject. Curcumin has been proven to demonstrate some positive effects against melanoma. Here are a zillion posts that discuss curcumin as well as many other things that "cure melanoma" – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=curcumin
Here are two reports that show combining alternative meds with conventional ones is not without risk:
That said, there are some things that we can do to help our gut have the right bacteria that MAY improve the effects of immunotherapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/microbes-againand-how-they-may-be.html
On a positive note…if you don't see it in my post regarding when to stop immunotherapy. After a diagnosis of melanoma Stage 3 b in 2003, another lesion in 2007, and brain and lung mets in 2010….after SRS to brain met and surgical removal of lung lesion (rendering me NED) followed by 2 1/2 years on Opdivo (no ipi)…last dose in June 2013….I remain NED in regard to melanoma with no further treatment!! SO…..if he is NED, esp on this upcoming scan…you have an excellent chance of "keep[ing] his melanoma under control". Knowing, that if there is someting on the upcoming scans…your husband STILL has options for additional treatment and melanoma control.
Hope this helps. Take care of yourself. Those who care for us melanoma peeps are the real heros!!!
celeste
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- December 2, 2018 at 5:03 pm
Celeste, Thank you so much for your reply. I am going to ask the doctor about the cortisole, and ACTH, I know his thyroid testing last month was ok. Thank you for all the different study’s to read, I will do that tonight. The supplements I am particularly interested in reading about as well. I have heard good and bad, and when I ask our Doctor he is not in favor of them. I look forward to reading the information links you have here on this site about the stopping of Opdivo, this has me extremely anxious. Although I did get equally as anxious about stopping the TAF/MEK, and steroids. My husband is not a candidate for any surgical removal of any cancer because of how wide spread the disease is, that is awesome news that you have been NED for 5 years. My prayers are with you that it continues for you. I am praying that my husband is able to maintain NED for 5 years or longer. That would be amazing. EnJOY every moment in life.
Michele
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- December 9, 2018 at 1:18 am
Hi Michiele,
I have been reading posts on this blog since my husband was diagnosed was metastatic melanoma, but only decided to subscibe when I read your post. Your story sounds so very similar to ours. My 41 year old husband was diagnosed stage 4 in March and it had spread all over: lymph nodes, bone, lungs, brain and heart. We received the same prognosis as you guys did and needed to move quickly. Like your husband, he was put on Ipi/Nivo but could not tolerate the treatment. He was hospitalized several times and only made it through 3 of the 4 doses, only to find out it hadn't worked. Everything grew and spread. He had visible tumors all over and it seemed the cancer was eating him alive. They switched him to Dabrafenib/Trametinib in July and we saw instant results. He has had horrible fevers however (still has them sometimes), and has had to come off the pills frequently until the fevers subside. He is now on a ver low dose of the pills combined with high dose prednisone. He will get scans again in a couple weeks to see if it's still shrinking the tumors. His doctor did mention the option of stopping the Dab/Tram pills (even if they're working) to try Opdivo again. When I read that your husband did that, I wanted to reach out. When they switched your husband to the Opdivo, were the BRAF/MEK pills still working? I'm curious why our doctor would want to stop a treatment that's clearly helping. Also, did your husband have success with tumor reduction when he was on immunotherapy the first time? I'm worried putting my husband back on a therapy that didn't work the first time is risky (though I have read that it sometimes works better after the BRAF/MEK pills)?
We have two small boys that desperately need their father around, so I'm searchig everywhere for new treatment options and hopeful success stories like yours. We love and trust our doctor at the University of Michigan, but it's the patient/caretaker stories that give me the most comfort, so thank you for sharing.
-Shannon
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- December 9, 2018 at 7:01 am
Hi Shannon,
As far as I know and what I have been told, targeted treatment (BRAF/MEK) is usually used as plan B because although it has a high success rate of shrinking tumors (90%), the effect is only temporary (9 months average) and unfortunately, 100% of tumors start eventually growing again. Yervoy, Opdivo and Keytruda have lower succes rates however in those that see success, the tumors are in remission for much longer (in some cases years).This would explain the reason why your Dr. wants to try Opdivo alone this time. Also, your husband's unfortunate side effects may have been caused by Yervoy and not Opdivo. I am also being treated at the University of Michigan and I love my Dr. As my profile states, I have started Yervoy/Opdivo treatments and am due for #3 next Wed. I would like to know what treatment if any did your husband undergo for brain met? I agree, thank God for this terrific site!
Best of luck to your husband and your family.
Melanie
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- December 12, 2018 at 10:42 am
Hi Melanie,
Thank you so much for your response. Our doc has told us the same thing about the 9 month average on the BRAF/MEK, though he did say he had some outlier patients who have gotten several years woth of results. I'm hopeful of course that will be true for us, but I'm realistic as well and want to be prepared with lots of options should it stop working sooner than later. That makes sense about Yervoy being the culprit of the side effects. He developed sarcoid like reactions which were very severe and from what I've read in journals, they are most often linked to the Yervoy. So I think they want to switch him to Pembro actually, rather than try the Opdivo again since it wasn't successful. For the brain met he did cyberknife which didn't work, but the BRAF/MEK have been reducing that tumor as well. Our doc said it's possible the cyberknife had some synergistic effect with the pills though, so I'm not sure we can say it didn't help at all. He gets his 6 month scans this week and we get the results next Wednesday so I think we may have to make some decisions at that point. My husband is just starting to feel normal and get his life back a little so the thought of switching treatments sounds awful to him, which I totally understand. However, I want to do what's most effective in the longterm so am willing to do whatever. I'm not the one who has to bear the side effects though. But as a caregiver it certainly is very hard.
So I'll post again with the results and any treatment updates. Thank you so much for your response. My friends and family are amazing but there's nothing like talking to someone who is going through it like we are.
Best of luck to you as well!
Shannon
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- December 10, 2018 at 1:55 am
Hi Shannon,
I am sorry for what your husband and you have been dealing with. This primer may help answer some of your questions:
Some docs try to avoid having the patient develop 'tumor work around' while on BRAF/MEK and switch to immunotherapy before that can happen. Additionally, the other responder is correct. The bad boy of side effects in immunotherapy is usually ipi (Yervoy) rather than either anti-PD-1 product (Opdivo or Keytruda).
Hope this helps. You may find the search bubble on my blog useful. I wish you and your family my best. Celeste
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- December 14, 2018 at 12:31 am
Hi Celeste – thank you so much for your response and the very helpful info. I've actually come across your blog several times in the last 9 months while researching. All the work you've done is amazing and has provided me with some great information, and some much needed comfort. I hadn't read the primer yet though, so I'm happy you reached out and sent that link.
The decision of whether or not to switch back to the immunotherapy is so challenging, as all these treatment decisions are. We're fortunate to have the support of a clinical trial as well as an awesome doctor to help guide us. My husband is a warrior as you, and so many others on this site, clearly are. I often feel so helpless in all this, but as a teacher and lifelong learner I've found that learning everything I can about this disease offers me a sense of control (false sense obviously…but it does the trick). I know the odds are against us but I choose to believe he will be one of the lucky ones to see some results while we wait for a cure.
Thank you again for your support and your hours of research. I have your page bookmarked now and look forward to learning more with you.
All the best healing vibes to you (and everyone here)!
Shannon
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