SGN-35 - weird side effect?

[Starbucks528]

Hi All - I have to admit, I am a bit of a lurker... My husband has HL, and after many relapses he started on the SGN-35 (w/o gemcitbine) in February and is doing great!!! The day he started on the treatment he was doubled over in pain and sleeping in a recliner...after the first treatment, the pain was gone!! Whoo Hoo!!

Anyway, he has been on this trial since Feb but in the last 10 days he has developed these weird red spots all over his arms, almost resembling an insect bite but not swollen like one. Has anyone experienced this? We are trying to evaluate whether this is drug related or not, its very bizarre! Nothing in his routine or diet has changed, so its a doubtful it is an allergy.

Thank you so much for your input!

[marshap]

First of all, congrats on speedy improvements!
I'm also on this trial (1.8 mg x 3 weeks) and I had my first infusion Tuesday.
Well, rash is listed as one of the side effects. Have you called your trial nurse? She might want you to come in and get evaluated.

I hope other SGN-35 people chime in.

I developed a 102 fever next day after the infusion and had to come in and be seen by the nurse. She decided it was more likely a side effect, not an infection, since my blood work was all good and there were no signs of anything else. i have no fever today, but feel lightheaded and disoriented.

Did your husband have any other side effects? I wonder if we can put together a collection of side effects, just to feel better and not panic, like I did yesterday.

Hope it works for your husband!

[zachanderin]

The only side-effect that Zach had with SGN-35 was some joint pain and fatigue. Both of these side-effects came along a little later - a few months into the trial. I spoke with someone else who had fever and vomiting after the first infusion but no side-effects since then. What dose is your husband on? Zach was on the weekly infusion of 0.8 mg. As the dose escalates, it seems that people are having more side effects which I guess is to be expected. It's interesting...with so few people having had the drug, you just never know what you are going to get....
Stay in close contact with the nurse/MD which I am sure you are. They seem to make it impossible not to, really!
Where is your husband being treated?

[marshap]

Erin,

In this phase of the trial we all get the same dose - 1.8mg x 3 weeks.

Oh, so somebody else had fever. It's listed at the top of the list of the side effects, but I for some reason always want to know in person. Seems like when somebody says Oh I had that!, I relax a bit.

The nurse told me not to expect that all my symptoms will go away in one day. I'm still itching (though maybe a bit less) and still have 99.5 fever. I just don't want any additional side effects, I have enough already.

[Starbucks528]

I did email our trial nurse this morning to see what she has to say, and yes, we are in what seems to be constant contact with her He did show her the rash (or whatever it is) on Tuesday but they did'nt have much information, she said nobody else had reported that symptom so who knows. It seems to be worse when he is hot, like when he gets out of the shower. All in all it is a minor and very managable side effect, just curious if it was connected.

Other side effects he has experienced so far; fatigue and the day of and day after treatment he says he feels like... slow in the brain, like he is kind of "out of it" but usually on the 3rd day his head is back to normal.

Aside from that, he really feels great. Life is clicking away as normal. We are so blessed to be only 2 hours away from a hospital that has the trial, this allows us to live a normal life, well as normal as life can be when you are on an experimental drug! He wakes up at 4:30am on Tuesdays, drives to Miami, gets treatments, labs, sees the doc, and drives home and goes to work. He is really a trooper, I am so proud of him, I know I couldnt do what he does!

I agree.. a running list of side effects might help us navigate through this uncharted territory!

[Starbucks528]

I am sorry ZachandErin ... I missed your last question I think, he is being treated at The Univerity of Miami, Sylvestor Cancer Center.

[momofMike]

Mike spends alot of time in the bathroom ( if you know what I mean) for a week after he gets treatment, then it tapers off. He has had 2 cycles and its been that way for both. Other than that, fatigue is his most complaint plus he is losing his hair.

[Starbucks528]

She wants him to see our local oncologist or internalist asap since the "rash" seems to be getting a little worse, and she wants picture emailed to the doc running the trial.

I will let you know the outcome!

[Starbucks528]

Hey Kimberly - Thanks for the suggestion! They arent really swollen like a hive would be, more like a lesion but without the sore part. I think we are going to try the antihystimine route, I will make sure to let you know!

[KEK]

Are they like hives? Initially Andy experienced almost 3 different types of rashes...the one resembling hives being the worst. He used benadryl and Zyrtec for awhile and eventually they went away. I think the Zyrtec was the most effective. Shoutout to Steve Barnes for suggesting it to us.

Kimberly

Originally Posted by Starbucks528

Hi All - I have to admit, I am a bit of a lurker... My husband has HL, and after many relapses he started on the SGN-35 (w/o gemcitbine) in February and is doing great!!! The day he started on the treatment he was doubled over in pain and sleeping in a recliner...after the first treatment, the pain was gone!! Whoo Hoo!!

Anyway, he has been on this trial since Feb but in the last 10 days he has developed these weird red spots all over his arms, almost resembling an insect bite but not swollen like one. Has anyone experienced this? We are trying to evaluate whether this is drug related or not, its very bizarre! Nothing in his routine or diet has changed, so its a doubtful it is an allergy.

Thank you so much for your input!