› Forums › General Melanoma Community › Opdivo/Yervoy did not work- now targeted therapy
- This topic has 7 replies, 5 voices, and was last updated 7 years, 4 months ago by
Joannxbuc.
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- December 19, 2017 at 8:01 pm
My husband was diagnosed with Stage IV Melanoma in September of this year. It started on the skin but had spread to the lymph nodes, liver, lungs and bone. So we know it is bad and wide spread. He received 4 doses every 3 weeks of Opdivo and Yervoy. The place on his skin got SO much better. It was large and open and had been oozing. It is now small and not open… however his CT scan shows growth of tumors inside. The doctor was shocked – had not seen that before.
Anyways, they are now moving us to targeted therapy treatment. He will be taking Trametinib (Mekinist) and Dabrafenib (Tafinlar). They told us these meds only usually work 6-12 months. This doesn’t sound great to us as he is 47 and we have 3 young children.
Have any of you done this and it worked longer? Or when the melanoma did come back, what was your next option? I am also wondering if anyone has ever done this to get their tumors in check and then move back to immunotherapy.
also would doing any of this, hinder him from clinical trials? Any knowledge would help.
we are also working on getting a second opinion.
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- December 19, 2017 at 9:19 pm
Hi CPM – I'm so sorry you've had to make your way here but you're in a very good place to have all your questions answered. There's a few things popping to mind immediately, so here goes:
1) is your husband seeing a melanoma specialist? I ask because you mention the doctor's "shock" at the spread of the disease. It's not uncommon to see even after receiving immunotherapy. So, is this a progression of the mel after receiving the 4 combo infusions or was some of this there before treatment (that would have to be a yes for the lymph nodes at least, although, normally, they are removed)?
2) In all of the initial steps, skin growths are normally excised to clear margins, so no cancer should've been left on his skin. Perhaps the incision had a bit of infection or took time to heal ..?
3) The course of 4 infusions of Opdivo and Yervoy is a common way to proceed and they may in fact be working in his system right now. For some people, the results are quick, for others it can take a bit of time.
4) When my sister hit stage 4 mel, the disease spread was already very extensive. Like your husband, she is BRAF + and her onc chose to go the Taf/Mek route first to knock back the tumour burden (in preparation for immunotherapy). This worked miraculously for her, although she wasn't on it very long due to side effects. We were also told, as you were, that it would be time-limited as the results are not usually lasting, HOWEVER, there are people for whom Taf/Mek does the complete job, is well tolerated and they can stay on it long term. Again, every case is different!!!
After Taf/Mek, my sister went onto immunotherapy – had only 2 of the 4 combo infusions of ipi/nivo (yervoy and opdivo) due to side effects, then had radiation because it spread to her brain and after that, went onto nivo maintenance infusions. It took a year but she is now NED (clear of disease). She's still receiving nivo every two weeks and will do until Spring.
Originally, her treatment was under clinical trial BUT she's now receiving the drugs through another arm of the drug maker (I don't fully understand what program this is) and has been told that she can stay on it for life, if need be. So, there are all kinds of clinical trials, new therapies in development and testing and more options every day!!
If your husband fails to respond to one treatment, there are most definitely other options but I would still think it's too early to say that immuno hasn't worked for him. It may be that it needs a bit more time or a helping hand from Taf/Mek. There are some on this board who are receiving both of those treatments concurrently right now.
So please don't despair. Do get your 2nd opinion for sure and ask both docs if he can go back on immunnotherapy after the Taf/Mek (depending on where you are located in the world, the answer could differ). If they say no then ask what plan they would come up with. That is what I would do for myself or a loved one.
There's lots of extremely knowledgeable people on this board, most of whom know far more about the disease and treatments than I do, so, hopefully they will chime in too!!
Wishing you and your husband the best possible outcome!! Please let us know how he makes out.
Barb
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- December 20, 2017 at 5:41 am
Barb- thank you so much for your response. To answer your questions, yes he is seeing a melanoma specialist. We live in TN and he is going to Vanderbilt University Medical Center. We are currently trying to get a second opinion with TN oncology that works with The Sarah Cannon Cancer Center. We are also trying to get another appointment with his current dr to make sure we understand the next steps.
The “shock” was the spread of the disease after 4 treatments of Yervoy/opdivo over 12 weeks. When I say spread – I mainly mean things have gotten larger. To be honest I am not sure if there are more spots or just that they got bigger. I was so shocked, it is like I could not even think when she was going over things with us.
He has had NO removals of lymph nodes and his mole on his skin was not touched as far as being removed. The only thing that could have helped it was the treatment. Our Dr told us that her and other drs were shocked and looked at the results together for 10 minutes in disbelief. They were so surprised because the place on his skin – where the melanoma clearly started looks great – has shrunk so much… but other things have grown. To me this means it did work for a bit, but not sure they have admitted that to us- what else can it be?!?!
Also thanks for sharing about the Taf/mek experienxe your sister had. I did ask about going back to immunotherapy and she acted like it was a possibility but she was a bit dismissal over it. My husband does remember her saying that we are going the Taf/MEk to get the cancer “under control”. I talked to a friend who is a pharmacist at Vanderbilt and she said it could be that his immune system was so compromised that the drugs could not “rev” it up enough.
also I forgot to mention that his LDH went from 900 down to 500 and dropped into the 400s for about 6 weeks then slowly crept back up…but still in the 500s.
again thank you and most of all your post has given me hope. As I mentioned before we have 3 little boys and we just need a little hope right now. Thank you again Barb. Megan
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- December 20, 2017 at 8:51 am
Hi Megan – thanks for clarifying a bit – primarily with regard to the "spread" as there is definitely a major difference between disease spread or progression (new and/or growing mets) and pseudo-progression in existing tumours (as Celeste explained, this is when tumours enlarge or swell as they are infiltrated by the very stuff that's going to kill them) !!. Your husband could be in the midst of pseudo-progression and on the verge of the immunotherapy killing his mel. His next scan could show this!!!
The drop in his LDH level is also a reliable indicator that something is definitely working for him!!! I really do think you have a lot more to be hopeful about than this doctor is suggesting.
Re. the doc – sorry but I should've qualified this a little more even >> you say she is a melanoma specialist BUT is she actually an oncologist who specializes in mel? She or he needs to be an oncologist who deals with melanoma all the time. It's the shock and disbelief of your doc and her associates, as you describe it, that I find a bit curious, given the short time since infusions were completed and (I guess) apparent non-consideration of pseudo-progression.
And, have to ask – how was your husband diagnosed?? Something had to be biopsied. Most people have a known "primary" lesion on the skin, such as your husband's mole might be but if they never biopsied it, how did they know they were dealing with melanoma? Was a biopsy of any kind performed on any of the affected lymph nodes or mets in other organs? Biopsies are necessary for staging also and your husband, as you describe his condition and treatment, is a stage 4 patient. If you click on Understand Melanoma, on the navy blue navigation bar at the top of this page, it'll take you through all the details and various procedures involved in diagnosing and staging.
If you get a second opinion (definitely warranted!!) and if that oncologist thinks it's too soon to know with certainty that immunotherapy is not working, he or she may also suggest going right on to nivo-only infusions. That would be ideal because it would save the Taf/Mek option for down the road if necessary.
But yes Megan – for sure get that 2nd opinion and definitely make sure this doc is an oncologist specializing in melanoma.
Last – you are most welcome to any and all of the help and ideas we can give you 🙂 That's what it's all about!!! Take care and best of luck with all of this!!!
Barb
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- December 20, 2017 at 2:18 am
Here is a basic primer on melanoma care that I put together: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
I hope your husband is seeing a melanoma specialist. He was not on immunotherapy very long. It is known that immunotherapy takes some time to work. Melanoma specialists note: "Be patient with the patient." You can see the graph included in this post notes that the average time to response is 12 weeks and sometimes not until much longer. Additionally, some folks do not see any response until much, much later. Furthermore, it is also known that infiltration of tumors with an influx of t cells and other inflammation can show itself as "progression" on scans as tumors may appear enlarged in that instance. There are many posts about this phenom on my blog (use the search bubble for info if you like).
It is fine to try targeted therapy…but he may need to switch back to immunotherapy before any cessation of response.
Finally, should these approaches not work, there is plenty of support here and plenty of trials that your husband can try later if needed. Ask questions here as you need. And this link: https://clinicaltrials.gov/ is pretty easy to search for trials if needed.
I wish you and your husband my best. celeste
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- December 20, 2017 at 5:47 am
Thank you for your response. I will check your blog for information. I think I answered some of your questions above in my response to Barb. I am curious about the immunotherapy – I do think the results may have “scared” the dr into moving us to the targeted therapy. I think they want to get it “under control”. Maybe that means we can go back to immunotheraphy- I don’t know. The whole thing kid felt hopeless. Like “here we are giving you these pills. They will get you through the next 6-12 months and then who knows…” I want some sort of direction. Not like I need a complete roadmap and I know things will change but like a plan of attack.
thank you so much – I needs some hope tonight and this Helped
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- December 21, 2017 at 2:32 pm
Hi Megan – my husband has been on Dabrafenib for 4+ years and is currently stable. He did have immunotherapy(Keytruda) concurrently with Dabrafenib but discontinued due to side effects. Our plan is to resume Keytruda or, whatever else might be in the treatment pipeline, if his situation worsens. He originally was on the Dabrafenib/Mekinist combo but couldn't tolerate the side effects and has been on Dabrafenib alone for 3+ years. I've learned that you can only deal with this disease one day and one treatement at a time. Research has come so far in the past 5 years since he's been diagnosed and has many promising options that are being studied. Take care.
Ann
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- January 10, 2018 at 10:54 pm
I have been on Taf/Mek for about 6 months–which I know is the likely start of the end of usefulness for this medication. It has worked well for me in reducing size of tumors and maybe limiting spread. I've had minimal side effects: some fatigue, a couple of weeks of 101+ degree fevers in month 2–which went away, minor rashes that come and go (and are not really bothersome). My oncologist is upbeat (but are they always that way?–other than yours being shocked). He seems pleased with the effects of the Taf/Mek medication and says that there are lots of other things to try. I did do 1 dose of IPI/NIVO before this (but side effects had to stop that treatment). I will be wishing you terrific results and a long good course on this drug. It's been good for me, JoAnn
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