Bad Side Effect of BRAF Drug

Posted By
8/2/2010 6:16pm
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Replies: 8

My husband  has been on Hoffman/Roche BRAF trial at UCLA since early Feb '10. After the first month, we started seeing red "bumps/splotches" that would appear on his arms or legs, they would swell up, be sore and itchy, then disappear a few days later.  Doc said it was a rare side effect of the drug. No worries!  But, since this weekend, those spots have gotten very large and developed blisters on them. Dirk was very uncomfortable.  I emailed the Doc  this morning and he said to stop the drug, has scheduled a CT scan and visit for Wed.  Anyone else experience this??? Just a little worried cause he has had a bad week or two, really tired and in pain.  He says all the "lumps" on and under his skin are hard and barking at him. 

Jan (Dirk's wife)

stage IV,  

WLE in Aug'09 arm and groin lymph nodes

Nov '09 new external mel on right torso 

Dec '09 mets in liver, lungs, kidney, R shoulder bone

laughter is the best medicine

Just an update on Dirk

Just got back from a full day at UCLA, blood, CT, Dr Visit...End result is, he has Shingles!  Didn't even see that one coming!  They took him off the BRAF drug for a week or so until this clears up.  Gave him Valtrex (antibiotic) and Relafen (for pain & inflamation).  Dr said this is common in people with compromised immune systems, like cancer.  He assured us it is NOT related to the BRAF drug.  We did not have time to get the results of his CT, so we will hear about that later this week.

Jan

laughter is the best medicine

Hey Jan,

This is interesting and I have not heard of it. Sending healing prayer to your husband for a quick recovery. Plesee keep us posted. love, Sharon in Reno  Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Fen - (8/5/2010 - 8:46pm)

 

I'm so glad it isn't  BRAF drug related, but it can't be fun!  I hope his shingles are cleared up soon.  It's funny how we never consider causes beyond melanoma or treatment. 

Never thought of it being shingles.  Have had them many years ago and, indeed they are not enjoyable in the least.  Still say this disease makes us hope we have things that we would never have wanted otherwise!  Glad it's mot Mel.

I'm me, not a statistic. Praying to not be one for years yet.

Finally got the results of Dirk's CT scan last Wed.  It seems that the there is growth in the lymph nodes in the groin area. The lungs and liver are the same as two months, four months, ago, etc.  no change.  

This may seem like a stupid question:  Could the nodes just be larger cause he is fighting off shingles?  

Don't know enuf about this...It seems like every time he goes to UCLA, they care a little less...he feels like a lab rat!  I can't get answers to my questions.

laughter is the best medicine

Anonymous - (8/9/2010 - 7:36pm)

Hi Jan,

 

I am sorry for your bad news. You are asking very good questions. What are your doctors saying at UCLA??? What treatment are they recommending??? If the UCLA doctors are not giving you answers< I would complain & tell them how you are feeling. You have a 50-50 chance that they might change their attitude.

 

Hpe things start to get better for you. Can you drop out of this trial & get intoanother trial like IPI????

Anonymous - (8/28/2010 - 12:44pm)

Hi Jan,

How is Dirk doing?

I am sorry for your bad news. You are asking very good questions. What are your doctors saying at UCLA??? What treatment are they recommending??? If the UCLA doctors are not giving you answers< I would complain & tell them how you are feeling. You have a 50-50 chance that they might change their attitude. UCLA doctors should be answering your questions, if not, I woulds seriously look at going somewhere else. Dirk should not be treated like a lab rat.

Hope things start to get better for you. Please keep us posted you have everyone support

Jan - I am so sorry about all this.  It took my brother almost beating me over the head to get me to understand, that the doctors really aren't being evasive, or they don't care...but in many cases they just don't have they answers when it comes to cancer.  I would suppose this is especially true when you are in a trial.  Try to hang tough and follow through.

It does seem like the lymph system could be reacting to the shingles. 

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.