@skfitz
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- January 16, 2020 at 10:20 am
My husband was on this medication for about 8 months and it was pure torture for him in terms of fevers and all the rest. He had to take constant breaks and had to be on a steady dose of 30mg prednisone. They finally switched him to Braftovi/Mektovi and life has been so much better. He is still seeing results a year later! We had our 3 month appointment yesterday and he is currently NED (after a body and brain filled with tumors). You may want to ask your doctor if you have the option to switch. It has made all the difference for us. Best of luck!
Shannon -
- March 11, 2019 at 9:06 pm
Try to hang in there, even though it's so very hard! My husband is stage IV and had tumors everywhere including his brain. They were moving and growing fast and furiously and he didn't respond at all to his 3 months of ipi/nivo. Within 3 days of the Taf/Mek we saw visible reduction. Those pills are amazing! When they work, they feel like a true miracle. Obviously there are drawbacks in terms of side effects and the fact that they will one day stop working, but with a disease this ferocious all we can do is deal with the most immediate situation. I hope your father responds like my husband has. You should know within a week I would suspect. I hope you both get some much needed relief.
-Shannon
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- February 28, 2019 at 10:36 am
Hi Anni,
This sounds exactly like my husband's experience. He only made it about 2 weeks before the rigors and sever fevers kicked in. His fevers hoverd consistently at 102 – 104, even reaching 105 a couple of times. The doctor reduced his Darafenib from the usual 150 twice a day, down to 100, and now down to 75. He also had to go on prednisone right away because he couldn't even tolerate the 75mg. The steroids helped right away. As an aside, Motrin and Tylenol did nothing for him. I gave it to him around the clock and it didn't touch his fevers or aches. So he was up to 30mg of prednisone at one point and is currently trying to taper. He was down to 15mg prednisone but then got sick again when we tried to raise the Dabrafenib a little. So it's been lots of ups and downs and lots of frustration. I would definitely ask your doc about steroids and dose reduction and see what they say. It hasn't been perfect but my husband has gotten some 3 and 4 week fever-free runs out of it. We are now focusing on intermittent dosing to help him better tolerate the pills. That might be something your sister wants to look into at some point (though there's no real directions on how to do it so it can feel risky). I wish you and your sister the very best and hope you find something that helps her soon. I'm still searching daily for my husband.
-Shannon
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- January 23, 2019 at 12:02 am
My husband and I have not had any problems, nor were we told to avoid unprotected sex. We were definitely warned about pregnancy but that was it. He was on the ipi/nivo combo for 12 weeks and has now been on Taf/Mek for over 6 months. No issues on my end whatsoever. Hope this helps!
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- March 20, 2019 at 10:03 am
I'm so sorry to hear that your mom is struggling with knee pain. My husband has had the same problems with his knees and ankles. Sometimes he needs a cane to walk. We've found that prednisone really helps since no pain meds have been able to touch it. Has your mom tried that? My husband started with 10mg prednisone but had to increase up to 30mg due to other side effects (fevers mainly). Perhaps your mom will feel relief with just 10mg. As for pain while shrinking, my husband didn't have any. He was very ill from the pills though so even if he did, he likely wouldn't have noticed. I hope your mom gets relief and results very soon!
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- February 13, 2019 at 10:26 am
That's fantastic news about your husband! I was at that same point of desperation in June when everything was going downhill so quickly. I too have hope now, not only in these pills which have given us time, but that a cure (or lasting treatment) will soon be found. My best to you and your husband for continued success and lots of new memories together!
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- February 13, 2019 at 1:52 am
That's amazing, Chelsea! Good for you for pushing so hard to get your brother those pills. Sounds like you too are an amazing, badass advocate! It's crazy isn't it? There's nothing I wouldn't do to save my husband's life, yet the rules and policies can be so frustrating and hard to navigate sometimes. It really does take a village. I'm thrilled to hear your brother's success story and wish him and your family the best.
Shannon
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- January 10, 2019 at 10:17 am
Hey Melanie. I'm so sorry you went through the same awful fever cycle as my husband. It's so frustrating and unpredictable, and makes it nearly impossible to get back to a "normal" life. I'll try the vinegar compresses next time around. For now we're just withholding both the Dabrafenib and Trametinib for a week or so to give his body a break. The doctors say to keep takin the Trametinib but we're trying a total wash out and reset. We might start back with intermittent dosing since that's been successful for many people. He's also going to start a serious anti-inflammation diet along with supplements: turmeric, co-q10, vit d3, vit c and calcium. Fingers crossed! All the best to you in your continued treatment!
Shannon
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- January 8, 2019 at 12:31 am
Hi Steven – thanks for the response. That's very interesting about the allergy thing. My husband is part of a clinical trial and they follow the same protocol. He has always been told to keep taking the Mekinist through the fevers, though we've been withholding everything on our own all week since he's been so sick. We see two doctors at two different hospitals (one for a second opnion every 3 months to ensure we're on the right track) and they have different strategies when it comes to the fevers and dosing. It's so confusing to know what't the right thing to do, especially when I see my husband in bed for weeks at a time. Thanks again!
-Shannon
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- January 8, 2019 at 12:26 am
Thank you so much for this, Ed! I watched the whole video and found it very interesting. It differs from what our oncologists are saying/doing, as they continue to focus on dose reduction. I'm wondering now if intermittent dosing isn't the better bet here. I've been reading a lot about that recently and it seems like it could be where this treatment is headed in the future. I'll definitely be bringing this up to the docs this week. Thanks again!
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- December 14, 2018 at 12:31 am
Hi Celeste – thank you so much for your response and the very helpful info. I've actually come across your blog several times in the last 9 months while researching. All the work you've done is amazing and has provided me with some great information, and some much needed comfort. I hadn't read the primer yet though, so I'm happy you reached out and sent that link.
The decision of whether or not to switch back to the immunotherapy is so challenging, as all these treatment decisions are. We're fortunate to have the support of a clinical trial as well as an awesome doctor to help guide us. My husband is a warrior as you, and so many others on this site, clearly are. I often feel so helpless in all this, but as a teacher and lifelong learner I've found that learning everything I can about this disease offers me a sense of control (false sense obviously…but it does the trick). I know the odds are against us but I choose to believe he will be one of the lucky ones to see some results while we wait for a cure.
Thank you again for your support and your hours of research. I have your page bookmarked now and look forward to learning more with you.
All the best healing vibes to you (and everyone here)!
Shannon
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