Call out for UPDATES! How are you doing?

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.
Respman
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Re: Call out for UPDATES! How are you doing?

Post by Respman » Wed Aug 15, 2018 6:34 am

Glad to hear that things are going well for you Dick. I had a question for you. I started the Zelboraf and Cotellic together two months ago. I've had horrible side effects from raised sore rashes to severe swelling in my lower extremities and more. We are going to 2 Cotellic per day instead of three to see if things improve but the Zelboraf is staying at 4 twice a day. My question to you is did you have any significant side effects when you first started the Zelboraf and did they resolve over time? Did you end up adjusting the dose? I appreciate anything you can share.
Thanks,
Jim D

DickK
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Re: Call out for UPDATES! How are you doing?

Post by DickK » Wed Aug 15, 2018 5:41 pm

Jim, I have managed to get a number of side effects from Zelboraf. I've had body rash (none on face), body hair loss (very little on head), very sensitive to sun, neuropathy in both feet (quite painful for a period of time), swelling in left foot, warts on various parts of body with some taken off. All except one wart that is taken off was benign, one was a squamous-cell carcinoma.

I also had some issues with my creatinine and bilirubin, these two were of enough of a concern that my dosage was cut back to 720mg in November 2012.

Today I only have the photosensitivity side effect. I deal with it with sunscreen and SPF rated clothes. (I'm particularly careful in the ten days preceding a check-up, no point in getting 'spoken to'.)

I'm sorry I can't tell you how long the side effects lasted. My recollection is about 12-18 months, excluding photosensitivity.

Hope this helps, and best of luck to you.

Respman
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Re: Call out for UPDATES! How are you doing?

Post by Respman » Fri Aug 17, 2018 7:19 am

Thank you. Not excited that this crap might go on for another year or two, but at least there is hope. Thanks for answering.
Jim D

saderdomer
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Re: Call out for UPDATES! How are you doing?

Post by saderdomer » Sat Aug 18, 2018 4:29 pm

Hanging in there since 2010 when I started out at stage 3B then progressed to stage iv in 2011. Rechallenged with Keytruda starting a year ago due to one uptake site. Immediately went NEAD. Continued Keytruda until March 2018. Clean PET scan in June. Another scheduled for October. No significant side effects other than fatigue. Now Dr. tells me to lose weight and get in shape. He did not think he would ever be telling his stage iv melanoma patients such things!

DickK
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Re: Call out for UPDATES! How are you doing?

Post by DickK » Sat Aug 18, 2018 4:59 pm

"...lose weight and get in shape", isn't it great when you can get back to these kind of issues? Congrats!

kylez
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Re: Call out for UPDATES! How are you doing?

Post by kylez » Sun Aug 19, 2018 10:31 am

Based on how things are going I can't complain at all, in the least. At my last scan in July there was a 4mm lesion in the left temporal lobe, down from 1.6cm before gamma knife in March. I started nivolumab + ipi in April. No significant side effects, knock on wood, and the Ipi part is over. My next scan is in October. Apparently mutated cells found a long-time safe harbor in the brain somewhere to quiesce for 7 years, unless it was a new metastasis from my chest which I was treated for more recently.

I also had brain surgery in December to clean up some necrotic tissue/radiation damage from 2011 in my right temporal lobe. They drained a cyst that was pressing on the walls of the old resection cavity, and cut out a section of brain sheath that had black spots. They grafted in a porcine implant. Neurosurgeons are crazed, gung-ho bunch I guess, happily for me. He also said to think of seeing some radiation effect now as a good thing, because it means it had been pretty well-blasted seven years ago. The recovery from the surgery took longer than I remember. He said they use a lot less steroids/decadron now after surgery than they used to, which probably explains why the effects from edema seemed to be more pronounced and longer lasting.

I feel better after these two events and treatments. I had a couple of mess-ups at work that, in retrospect, may have been affected by these two things pressing on me.

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Thu Aug 23, 2018 6:47 am

You have certainly endured a lot and with a wonderful attitude. I hope that this past treatment will be successful for you. It sounds like you have a great team working on you. Take good care and keep in touch.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Thu Aug 23, 2018 12:10 pm

It may be trite, but the "new normal" is what we all feel when faced with life threatening disease. I hope to look on the bright side that we then cherish what we do have.
Catherine M. Poole, President/Founder
Melanoma International Foundation

buffcody
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Re: Call out for UPDATES! How are you doing?

Post by buffcody » Fri Aug 24, 2018 6:24 pm

Kyle, Glad to read that things are going as well as they are for you. I'm sorry that those cells seem to have been hiding up there in your brain on the march again. And very much hope that you have disposed of any future fugitives through your treatment. You are one of the few who have been around in this fight longer than I have. I'm aided by your perseverance as well as your occasional advice. Frank

AlanF
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Re: Call out for UPDATES! How are you doing?

Post by AlanF » Fri Aug 31, 2018 4:12 pm

Catherine Poole wrote:It has been a long time in our relationship Alan, so happy you are doing well. We certainly has some ups and downs..best wishes
Thanks Catherine. Been on vacation for a few weeks. When I had my clinic visit my oncologist looked at my ears. Called my otolaryngologist and noted my recent PET scan for his attention. He then called me with an appointment with a Head/Neck specialist in his department in 2 weeks. Hopefully something can be found to diagnosis and treat this hearing loss. Also had a skin check the other day in the Melanoma Skin Lesion clinic and all is good, no abnormal moles.

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