@dwarla
Forum Replies Created
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- October 28, 2019 at 8:32 pm
Cindy Lou,
I have been taking Tafinlar/Mekinist for slightly over a year. I have had fevers one time for 2 days. I have gotten vitiligo. My hair is changing color, texture, growth directions and curling! I have acquired a slight rash in the last couple of weeks. I just had a biopsy on a place on my ear but have not heard results yet. Basically I have done very well on these meds. I take 200mg of Tafinlar and 1.5mg of Mekinist. These are slightly lowered doses. I hope you do as well as I have! I wish you well! -
- September 5, 2019 at 3:42 pm
Hi Mike,
I’m so glad that you have an appointment with Hamid. I don’t think you are too sensitive and I know how you feel about the insensitivity! Once or twice my husband has had a “talk” with my doctor or nurse because of their insensitivity when I can’t take much more. It’s very hard to fight the melanoma and the system but we all have to! You are a strong person and I love your attitude! You help us all be stronger and I hope we help add to your strength as well!
Robin -
- August 22, 2019 at 4:32 pm
Hi,
I have been on these meds for almost a year. I started them in a clinical trial along with a melanoma vaccine that the University of Virginia developed. That involved 6 injections in my thighs. I have had a few small bouts of acne, the bottom of my feet hurt occasionally, and some of my eyelashes turned white. My hair is changing color, texture and I think a slight curl. I never lost my hair. I am losing the pigment in my skin on my hands, arms and shoulders. My oncologist says that my hair and skin are good signs. Some of these may be caused by the vaccine but I have tolerated it and the Mekinist and Tafinlar very well. I had 2 large lymph nodes that grew larger and larger while taking Opdivo. They were melanoma. I also still had lesions in my lungs, on my liver, and some on L4. One lymph node is gone and the other has greatly decreased in size and continues to decrease. Everything else has been stable for 2 years. I wish you well and hope and pray that you have even better results than me and tolerate the meds as well as I have!
Robin -
- August 10, 2019 at 8:27 pm
Mike,
I’m so happy for you! It will be good for you to see family and think and do something besides cancer! My husband and I took a trip out your way and to Yellowstone and Colorado (where I’m from) this summer. We have never taken a trip like that. I tell my husband about you. Have a wonderful time and tell us all about it! Can you get stronger pain meds?
I hope Dr. Jang does what you want and need! You are very strong!
Robin -
- July 27, 2019 at 2:52 pm
Mike,
I’m so glad you have a plan! I’m so sorry that you’ve been put through so much. I agree with changing your name to something like what was suggested or Mikekicksmelanomasbutt! It may sound crazy but I think you need to quit hosting melanoma too. Like….I’m melanoma and my host was Mike, but he’s kicking me out!. Sometimes when we label ourselves, we become that label. I know, it’s crazy but I believe it. I try to keep up with what is going on with you but I don’t post much. I consider myself part of your family so I hope you don’t mind me suggesting the changes. I truly hope and pray that you get the help and treatment that you so deserve. You have my support!
Robin -
- July 7, 2019 at 7:51 pm
When my melanoma first metastasised, I had lesions in my lungs, right adrenal gland, liver, subcutaneous, and on my spine. I started treatment on Keytruda and all but my lung and liver lesions disappeared. I later got a 3 cm tumor in my bladder that was surgically removed. I also had 2 left axillary lymph nodes that had melanoma develop and keep growing. I also developed a lesion on L4.. I was able to take 2 treatments of Opdivo/Yervoy but ended up allergic to Yervoy. I took Opdivo for several months and was then accepted into a clinical trial at the University of Virginia which consisted of a melanoma vaccine that they developed along with Tafinlar/Mekinist targeted therapy. The lesions on my liver and lungs have been stable for 2 years and are very small. The lesion on L4 is scarred and stable. One lymph node is gone, so to speak and the other is disappearing and the tissue is considered dead. I am still on a regimen of Tafinlar/Mekinist. I have been blessed to not suffer any side effects except fatigue and some joint and muscle pain. I am losing all of the pigment in my skin so I have to be very careful of the sun and it looks ugly but I am alive!
I am sorry your father and family have to go through this. There is hope! There are more treatments available now than when a lot of people on this forum started their journeys! Keep a positive attitude, ask questions on here and stay strong! It is very scary but you are not alone! My best wishes for your father! -
- June 25, 2019 at 7:36 pm
Some of my tumors have disappeared, some are stable and some new ones have shown up and grown. I longed for the time I would be NED! The ones that have grown are now gone or leaving and the rest are stable. I feel as good now about stable as NED. I have been very blessed with great results to treatments of Pembro, IPI, clinical trial of vaccine along with Tafinlar and Mekinist and now just Tafinlar and Mekinist. I had an allergy to Nivo. I pray that your tumors disappear!!! I pray that you do not get any side effects!!!! If you remain stable…..that’s great! My very best wishes to you!! -
- April 16, 2019 at 2:59 pm
I learned the hard way that there are different sorts of magnesium. I am on magnesium oxide. Once I was not able to find that so I purchased magnesium citrate. I had diarrhea so bad after taking it. I was told by one of my nurses that they give magnesium citrate for constipation. That may be what your mother is talking about. I will make sure from now on that I only get Mag-ox!!!! Good luck to you!
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- December 18, 2018 at 7:50 pm
Yes, I had blood in my urine. Not always visible to me. I went through several rounds of antibiotics and finally was sent to a urologist. He is Fantastic!!!! I just had my first cystoscopy since surgery to make sure nothing returns. He intends to keep a very close check on me,which is fine with me!!!! I hope they discover your husband's problem and solve it quickly!
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- December 12, 2018 at 8:47 pm
I had mets in skin as well as organs. Mine were not nearly as severe as your father's. I had red, tough, knotty places around my navel that went down into abdomen and knots on my back. The place around my navel was probably 6" in diameter. They thought it was cellulitis to begin with as I had just had surgery. After antibiotics didn't work and they did a Ct scan, they discovered it was metastatic melanoma. I was placed on Keytruda and the knots on my back disappeared. The places around my navel left a little at a time. It took 6 months or more so hang in there! Celeste is a great source of knowledge. I can offer moral support and prayers. Please keep us posted!
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- July 4, 2018 at 3:38 pm
Thank you!!!! I have only had 2 ipi/nivo treatments and 1 nivo so I think it's early to say I'm not responding. Since I'm allergic to ipi and just had the first treatment since my reaction, they lowered my dose to make sure that I could handle the Opdivo. The doctor at Wake Forest will look at my treatment since day 1 and give recommendations on how to proceed. There are clinical trials and different treatments at Wake Forest. I am unsure of my BRAF status. I have had Chronic Fatigue Syndrome for 6 years and metastatic melanoma since December of 2016. My husband does almost all of my work plus his work. It has been very difficult for both of us to try to keep up with everything plus keep up with all the medical options. The NP did lie to me. The rest was me not understanding what they were doing and them not explaining things as well as they should. I appreciate all of you for your explanations, questions, and support. It's worth a lot!!!!
Robin
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