MCL with a serious skin reaction after Bendamustine...later found to be allergic to bactrium

PBL said:

Hello Roxanne,

Hello Roxanne,

 

I am sorry your brother is suffering from such a strong reaction to his treatment. Although I haven't personally had Bendamustine - but many here have, and I am sure will shortly be able to answer you - I am aware that it can indeed cause severe skin reactions in some patients.

In your brother's situation, in the event he is being treated at a "run-of-the-mill" cancer center, I would seek specialist advice from a NCI-designated cancer treatment facility, or at the very least a teaching hospital, preferably before his next infusion.

I hope this suggestion can help, and that others here will have more first-hand information to share on Bendamustine skin reactions.

PBL

Thank you PBL.  I will share that recommendation with him.

R

Max Former Hodgkins Stage 3 said:

RC2,

RC2,

The link below is a data sheet on Bendamustine.  It is a fairly common lymphoma drug in the last decade.  I can't recall people mentioning itching as a problem with it, but rash and itching are listed as fairly common side-effects reported with it (10-29% of users).

Liver disease or skewed liver enzymes (from whatever cause, including chemo) are a frequent cause of itching, and the sheet also mentions elevated bilirubin in some, which can cause jaundice or yellowing appearance in the eyes or all over (skin).  It is also the case that numerous chemos cause temporary elevation of liver enzymes (mostly AST/ALT) but these usually drift back down after infusions end. I hope that any member who has had itching on Bendamustine will post.

Rituxan is very common in use, and its sheet does not list itching at all.

I began Allpurinol myself months ago hand have had unexplained itching since, and itching is listed as a side-effect of that drug also (I take it for gout/reduction of uric acid).  I appreciate your mention of it, since it may well explain my situation also.

It is the duty of his oncologist to figure this out, and it sounds like he is working the issue. Be aware that oncologists frequently get a sort of tunnel vision, and focus mostly on the reaction of the cancer to treatment, and side-effects are often quite secondary to them.   It is left for the patient in such cases to bring the side-effects to the fore.

max

 

http://chemocare.com/chemotherapy/drug-info/bendamustine.aspx

Thank you so much, Max.  The rash and itching has stopped and he'll be going for another treatment next Thursday.  We'll meet with the doctor and will have many questions.  I appreciate the information you provided and will keep it in mind.

Best...Roxanne

Max Former Hodgkins Stage 3 said:

Certainly

Roxanne,

We share as laypeople with no medical credientals what we have seen and experienced ourselves.   I have often written here that I've had no medical training, just numerous medical things. 'OJT' ('on the job training'), if you will.

You might want to private message illead regarding Mantle Cell (MCL) treatments, since she has been researching the disease for her husband for over ten years now, and travelled to some of the world's best doctors in getting him care. Ten years ago, the prognosis for MCL was very poor. Very.  The difference between utilizing a MCL specialist and an oncologist who is not is often vast.  Illead will share the most recent information,

max

I will message Illead to get more information. It turns out the allergic reaction Steve had was to the bactrium that he was taking to prevent pneumonia.  Now he is having great difficulty breathing so is headed back to the doctor tomorrow.  Thanks again!!

Max Former Hodgkins Stage 3 said:

Appreciate it

Thank you also, RC2.

Many here will appreciate learning that it was not the Bendamustine or Rituxan responsible, since B & R use has become very common for numerous lymphomas.

I hope now that the actual cause is know his situation can be improved fast.

max

Max,

Do you know anything about cytarabine being used in place of B & R?

Thanks...Roxanne