- October 10, 2020 at 9:58 am
A little backstory:
My husband was diagnosed in Dec. 2005. Initial mole was on his L scapula area. A wide excision on L scapula was performed as well as a lymph node removal of a small sampling under his L axilla area which came back negative. He received two rounds of injectable radiation and that was it. His initial staging was Stage II B. He went into remission.
Fast forward to April of 2016 and he was diagnosed with Non-Hodgkins Extranodal NK T-cell Lymphoma Stage III. (Melanoma has been linked to Lymphomas.) He received intensive, around the clock chemo for 8 days, x2 as well as 240 rounds of radiation thereafter. Has been clean of lymphoma since.
Fast forward to 2020. Was diagnosed back in May/June with Melanoma stage III B when a tumor showed up under his L axilla (the original site of the removal of a few of his lymph nodes in 2005). Wide excision of the L axilla was performed as well as a total dissection of all lymph nodes in that region. Monthly IV Immunotherapy using Opdivo was started in July and my husband had received 2 total doses of it when it was noticed very quickly growing masses in the same L axilla region. Biopsy revealed Melanoma. MRI of brain and total body PET was performed. MRI was clear, PET showed my husband now has 14 areas of metastasis including 2 spots in his liver and 3 spots down his spine. He is now an aggressive stage IV.
Immunotherapy has been discontinued and we are awaiting some medication in the mail that will supposedly help prolong his grim prognosis. Apparently he carries the right biomarker that is receptive to this medication. We are also seeking opinions from Huntsman Cancer Institute in Salt Lake City (where he was previously treated for his first two cancers). We currently live in a very remote part of the NW corner of Montana. We arrive to SLC on Tuesday night. His appointments are on Wednesday the 14th.
Seeking guidance and support from those who understand. I am 44 years old, an OB RN, a mother of 5 children we share together, married 21 years this last march. I am about to lose the love of my life very soon. At 43, he is much too young. I hope I can find someone out there who knows what this is like.
You should consider ipi+nivo immunotherapy. In March 2016 Keytruda immunotherapy had failed me. I had melanoma in several bones including in my spine.
- October 10, 2020 at 11:57 am
Ipi+nivo immunotherapy made my bone cancer disappear. Opdivo is very similar to Keytruda. I am sceptical of mail order medication, unless it is recommended by your oncologist.
Thank you for your quick reply <3
- October 10, 2020 at 12:56 pm
I'm hesitant about immunotherapy now. His tumors appeared after two doses of it, and I had found a journal study that found of all those that the immunotherapy doesn't work for, 9% of them the immunotherapy actually hastens the tumors, and all most of those were after two doses. My husband's case seems to mirror the study I found. But we travel to Huntsman next week and if they suggest it, we may do it. We trust that center immensely as they had successfully treated him twice in the past for cancers.
As for the pills in the mail, these are pills that our local oncologist is adamant that he take right away. He stated they are too controlled to be in local pharmacies which is why they are mailed directly to patients. I do not remember what the name of it is, we were on a teleconference as we live very remotely and our local oncologist is an hour and a half away. But he said my husband carries the Braf biomarker that is traditionally receptive to these pills he's sending us to buy him a little more time. Possibly even up to a year or two. But again, I will trust Huntsman more, they have renowned professionals there that focus solely on melanoma and have many clinical trials going on right now as well.
Again, thank you for responding! It's very appreciated. I feel so alone in this.
- October 18, 2020 at 9:30 pm
First, your husband is young and strong, do not even think of giving up. I’ve been quiet on this board for some time, but for four years I battled non-stop progression and we threw everything in the book at this monster. The people on this board were an amazing source of info and support. Those pills may be Zelboraf. I had to go to a very specialized pharmacy to get mine. Although I had some bad side-effects, they worked magic on immediately reducing tumor load. That’s the key to let immunotherapy do it’s work. It was not until I did the ipi /nivo combo that we felt we had found something that was working, but it took a surgery too, removing my spleen which was fully engulfed to end the cycle. Once my tumor load had been reduced, we feel the immunotherapy really had a chance to work. Hang in there, it’s a tough battle but here I am, 4-years in a stable remission and although I live in Hawaii, I drove through Montana just last month. You just never know where fate will lead you.
Mark_DCParticipantHi Gary – it’s great to see you log in and write again. Your case helped me and others as I thought you had little chance, and I remember you referring to your tumour as the size of a grapefruit, but once removed the immunotherapy kicked in and seemed to work. Your experience encouraged me not to give up. For me it was adding TVEC to pembro when pembro alone was holding it in check but not sufficient.
- October 19, 2020 at 12:37 am
Dear TP – I hope your appointment last week went well and that you can give us an update. Make sure to see a melanoma specialist. If your husband is BRAF positive then there are quick acting medicines that work for most, if in most cases temporarily. I was worried by the number of lesions but I hope they are small – it would seem premature to give up on immunotherapy. There were some reported cases or theories of possible hyperprogression but this is not mainstream and I would not read too much into this. Gary (polymath) seems to have pulled it off when things were bad, as have many others here, I hope your husband sees melanoma specialists and finds a path too
Best wishes Mark
Thanks Mark for your good wishes. Yes, you remember well and I am very happy you are still here as well. Making progress I hope!
- October 21, 2020 at 12:54 am
I’ll try and check in more often. I just needed to step away for a while after having this consume me for those years.
BubblesParticipantI am so very sorry for what you and your husband and family have and continue to endure. Melanoma sucks great big green hairy wizard balls. There are no words to describe having to suffer from two cancers!!!
- October 10, 2020 at 2:08 pm
My first and very best advice is to see a melanoma specialist ASAP!!! It sounds like that is what you are doing by going to Hunstman. So that is very good.
Here is a primer of current melanoma therapies (and covers immunotherapy, targeted therapy and radiation) that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
Here’ a quick down and dirty –
Immunotherapy – We know that about 40% of melanoma patients respond to anti-PD-1 drugs like Opdivo and Keytruda. However, when those patients are treated with the immunotherapy combo – referred to as ipi/nivo – responses can be 50% and better. Also, we know that patients who fail Opdivo, can respond when ipi is added. There are tons of articles about that on my blog. However, we also know that immunotherapy can take time to work and works best with a low tumor burden. That can be a problem when there is a lot of disease.
This brings us Targeted Therapy – For patients who are BRAF positive (about 1/2 of melanoma patients) targeted therapy with a combination of an oral BRAF inhibitor with an oral MEK inhibitor – a response rate of about 80% or better can be attained! The best targeted therapy going currently is named Braftovi/Mektovi. Here is a post in which I compared reports on various BRAF/MEK combo’s: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/12/brafmek-combos-for-melanoma-analyzed.html
It is super important to take a combo – as we have learned that single agents of targeted therapy are not advised except for certain other mutations. Additionally, we also know that for most BRAF positive melanoma patients, the response is rapid and miraculous, but can also be expected to last only 6-9 months. BUT – do not despair. Often, once the tumor burden has been diminished, those same patients can do very well when quickly switched to immunotherapy – like the ipi/nivo combo. Alternatively, there are those who do well on targeted therapy for years.
Radiation – Radiation is not effective on melanoma when used alone. However, when combined with other systemic therapies. Here are a zillion reports – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation
Finally, though there is a slight propensity for melanoma patients to develop other cancers, it is not terribly common. I would certainly ask about a full genetic evaluation of your husband’s tumor. Especially in those whose melanoma does not respond to typical treatment, this has been useful. We have one member of this forum whose husband has been maintained for years on drugs commonly used for HER2 breast cancer, determined by a full analysis of his melanoma.
I hope these articles give you information that will aid you in finding an appropriate treatment plan for your husband at Huntsman. I also hope they give you hope. I was diagnosed with Stage III melanoma in 2003 at the age of 39 with a 10 and 12 year old, advanced to Stage IV in 2010 with brain and lung mets. I was then in an immunotherapy trial – and remain NED for melanoma today. I did manage to have a super weird and rare appendiceal cancer in 2018 for which I was treated with surgeries and chemo. So – I really feel for what you and your husband are dealing with. BUT!!!!!!!!!! I am still here. There is still hope. Ask more questions as you have the need. This board is filled with knowledgeable and caring peeps. I wish you my best. celeste
MelMelParticipantEdwin and Celeste gave you excellent advice!
- October 11, 2020 at 4:27 am
I can only share my personal experience. Being diagnosed with stage IV from the start (Oct. 12, 2018), it made no difference how many places nor how many tumors I had at the time. They were in my lungs, liver, back, and numerous lymphnodes throughout my thorax. I was given six months. Desperate times called for desperate measures and so I chose the combo immunotherapy of Yervoy and Opdivo starting Nov. 2, 2018. After exactly two infusions, I was taken off treatment due to a liver injury. Regardeless, within two months from starting treatment, my tumors shrank 50% and then additional 30% within the following two months and this is after only two combo treatments since I never resumed the combo therapy again. So there is no question that the combo immunotherapy works! Eventually, I resumed immunotherapy and now I am on Opdivo only. My point is that with the combo, your husband does not need to get all four infusions in order to possibly see dramatic and rapid results. From your post, I assume he is BRAF positive so he has target therapy as an option as well. I chose to use this as a last resort, back up plan in case the immunotherapy did not work. Your husband may need to have this first to reduce his tumor burden. Of course, you can discuss your options with his melanoma oncologists. I have shared my path just to show you what is possible so although I know you are overwhelmed, please never lose hope and never think that you are alone.
After you see the specialists, things will be much clearer and your husband beat two cancers before, so there is no reason he cannot do it a third time.
Stay strong, remain optimistic and preservere.
My thoughts are with you and best wishes for your husband’s rapid healing.
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