› Forums › General Melanoma Community › Husband recently started on Taf-Mek
- This topic has 7 replies, 4 voices, and was last updated 5 years, 8 months ago by
jrtufo.
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- July 31, 2018 at 10:14 pm
My husband, age 67,was originally diagnosed in Sept.2017 with a 5mmdeep ulcerated lesion.lt was surgicaly removed and he went thru the snb and found it had not gotten to the nodes. He was staged at 2b with the most agressive tumor class. He did opdivo for about 6 months and then noticed a small lump on the original site on his scalp. It was tested and removed and it was a melona again this time inside of a lymphnode. The dr., Dr. Lemming in Cinti. then said he was stage 4, took him off the opdivo because it hadn't worked. More testing was done on the tumor and it came back BRAF positive and he said the opdivo was not the right drug. He is now on Taf-Mek and feels awful. He sleeps alll the time, doesn't have an appetite and occassionally runs a fever. Are all these typical side effects. We just didn't expect him to feel so bad. The opdivo didn't seem to make him feel anything more than just a little tired. How long do people usually take this for and do you begin to feel better after awhile. We were just wondering if this is the new normal. The dr. has not been specific about what we can expect. Thanks! mk
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- August 1, 2018 at 12:26 am
Hi MK, I can only tell you my experience in hopes it helps. Have been on Taf-Mek for 16 months for stage 4 melanoma. Had surgery to remove 28 lymph nodes in R axilla than was on Yervoy 6 months but abdominal lymph nodes continued to enlarge and had to have surgery on R neck to remove enlarged lymph nodes that were + for melanoma. Yervoy stopped and placed on Taf-Mek 16 months ago. After starting Taf-Mek lymph nodes in abdomen have decreased in size and have remained stable. As far as how long he will be on the treatment depends on how well he responds but usually on it until it becomes ineffective. From what I read and was told that is usually about 1 year but have read other folks have been on it for much longer. I figure it worked for me the past 16 months so am hoping will continue. Side effects vary. I can tell you that my side effects have lessened in that they don't occur as often but can be rough to handle. I do still have fatigue and always feel tired but still work full time (I'm 60) although some days are tough. Biggest side effects I've had are occasional upper and lower GI issues, but in general my appetite is unchanged. The worst I find are the occasional fevers. I've had temps over 103 and the shivering is horrible (bought a heating blanket…best investment) and take tylenol. I use extra strenght tylenol because regular does not help me at all. There was a point about 3 months after starting treatment that side effects got so bad my oncologist gave me a week "vacation" from the meds and lower my dose of Taf to 100mg twice a day instead of 150mg twice a day. It did seem to help a little bit but as noted above did not really lessen the side effects. I know it's rough but give it some time and see if it is working. I can tell you that I feel lucky. Yes, I have to deal with some bad days but they usually only last 3 or 4 days, and I am rolling along and getting to enjoy watching my grandchildren grow. I know it's difficult to keep postive but I always try to remember there is always someone that is much worse off than myself. I wish you and your husband the best and hope things will get better. Please keep us informed on how your husband is doing. Mike
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- August 1, 2018 at 1:13 am
Thanks so much for your reply. I am discouraged to hear that this might be our new normal. I am just finishing up chemo for breast cancer. I did tchp which made me sick but I still worked everyday. His diagnosis came at the same time as mine so it has been a rough time. This was my 3rd go round with breast cancer. He had just retired when he was diagnosed. He does more scans I think in about 4 weeks. So far nothing anywhere else, but I am concerned that his feeling so awful means that the cancer has spread somewhere else. It is hard not knowing what to expect. Since I had been thru chemo twice and my oncologists office explained how everything would be in detail I knew what to expect. Melanoma is a different beast. Thanks! Mk
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- August 1, 2018 at 12:53 pm
Hi MK – wow…you guys are going through a rough patch. My husband has been on Tafinlar for 5+ years. Was on Taf/MEK at times but the fever/chills and other side effects were too much so is only on Tafinlar at a reduced dose. You might want to ask about intermittent dosing or a reduced dose to see if that helps make the side effects more manageable. At this point, my husband's side effects are mostly related to muscle/joint pain and fatigue which he is able to manage. All of the melanoma treatments can mess with the adrenal system so I'd also recommend getting his cortisol, thyroid, etc. levels checked. Lastly, we also see a Palliative Care doc who has been very helpful with managing the side effects of treatment. Take care.
Ann
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- August 2, 2018 at 12:33 am
Thanks for the reply. We spent the afternoon at the onc. office after he about passed out. I knew he had been feeling bad but he wasn't really upfront about how bad. Today he hit the wall. I almost brought him to the ER but the NP called me back and said to bring him in to the office right then. He had lost 4 pounds in 2 days and was really dehydrated. The nurse had been on vacation and had not really gone over the side effects with him. The doctor kind of blew him off a bit when he said he wasn't feeling well when he saw him on Monday. The NP said they are going to temp. stop the tak -mek and get him back to feeling better. She said that it could also be the opdivo that is still in his system. They gave him lots of fluids and instructions to drink lots more and call tomorrow. Next week if he is feeling better they will start back again with a lower dose. At the very least the worst part of my chemo is over so I can help take care of him. This melanoma is way scarier than the breast cancer was for me. How is your husband doing?
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- August 2, 2018 at 12:30 pm
Hi – my husband is doing well. His scans have been stable and he is having his 6th Keytruda infusion this afternoon. My husband had to stop Tafinlar a couple of times with severe side effects that landed him in the hospital. He recovered pretty quickly while on the breaks so hope your husband does too. Make sure they check him for adrenal insufficiency as this is very common and could be contributing to the extreme fatigue.
Ann
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- August 2, 2018 at 10:37 pm
Good to hear your husband is doing well! These drugs seems like they can be really rough….my chemo was really bad but at least I had an end point and time to recover in between the treatments. These side effects seems really scary to me. Thanks for your replies, it really helps to know someone else out there is dealing with this. mk
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- August 17, 2018 at 1:02 am
I've been on the Taf Mek combo for about a year. The fatigue is overwhelming. The docs have me stop when the fever and chills hit, but nothing much can be done for the fatigue. I exercise first thing in the morning and sleep the rest of the day. Wish I could say that it's getting better, but for me, it's not. Everyone is different and his body may adapt better. Give it time and be 100 % up front with the docs. Also I've tried the Keytruda and that was stopped due to too many complicatons. But that can make a person tired and it does stay in the system a long time.
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