@cpm0720
Forum Replies Created
- Replies
-
-
- June 8, 2018 at 4:19 pm
My husband is on Taf/Mek and he has had back pain. Also, his side effects seem to come and go. (They seem to be the worst as soon as he starts a new bottle of meds.) If your husband was showing response, I would not lose hope that it is still working because he has back pain. Are there any tumors he can feel and can he tell if they are shrinking? My husband can feel certain lymph nodes and can tell when they shrink. Also, when his side effects are the worst, that is when his tumors shrink the most.
Just wanted to send that encouragement to you. I know it is hard not to look into every pain but praying this is just a side effect and the Taf/Mek is doing its job!
-
- June 8, 2018 at 4:05 pm
Side effects are a good indicator from what I have been told but it may just take a little bit for your body to react to the drugs. My husband was on 4 cycles of Yervoy and Opdivo. He was doing better about mid way in and then started to feel worse. After 4 cycles, he had progressed so we moved to targeted therapy. With that said, he started having eye issues about 1 month into the targeted therapy. He saw an eye specialist who had been dealing with cancer patients for years and she was fairly sure it was from the Yervoy and Opdivo and NOT the targeted therapy. His eyelashes also started turning white around that time as well as his beard. All that to say, you never know when the immunotheraphy will kick in so just because you do not have side effects right away does not mean you will not.
-
- 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
-
- 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
-
