[kriddy]

Can Velcade cause flu-like symptons?

by kriddy on Wed Jun 11, 2014 2:59 am

Hello, I have previously had some great responses from this community so I thought I would turn to you guys once again.

My mother in law had stem cell transplant end of January. She recovered quite well with 1% myeloma cells left. Her maintenance is Thalomid 100mg tablets and the Velcade injections every 2nd week.

She was doing so well back at work and almost like her old self again. This last week she has come down with a bad cough, runny nose, etc. Her temp was at 39.5. Hospital ran bloods, chest xray, and ruled out pneumonia. They said it could just be a side effect of the Velcade.

So my question is: are flu like symptoms common? Even though she has been having these injections since first diagnosed in September 13 and now as maintenance?

The dose of her morphine patches were also reduced as her oncologist thinks she is coping quite well with the pain. Could it be from that?

I am so sorry for rambling on. I just get so worried that she may get a virus and never recover. I look forward to hearing your responses. Thank you.

[Eric Hofacket]

Re: Can Velcade cause flu-like symptons?

by Eric Hofacket on Wed Jun 11, 2014 2:19 pm

First, I am not a doctor. I never experienced those symptoms from Velcade, maybe others have, an oncologist who has worked with Velcade a lot should know. I also went through drug withdrawal coming off of opiates, and I did not experience those symptoms myself.

I have had the symptoms you described a few times, though, when my WBC were at low levels as a result of being suppressed from taking maintenance doses of Revlimid. These are the kind of symptoms you can get from neutropenia or lymphocytopenia, which are the medical terms for low levels of neutrophil and lymphocytes white blood cells.

With a low WBC count, the bacteria and viruses that are present in everyone are no longer kept in check as well and they can start to take over. In my case, I get a runny nose, scratchy throat, sometimes a mild fever, and generally feel tired and like crap. Velcade makes a lot of people feel tired and like crap, but I never got a runny nose or fever from it in my case.

When I went into to Urgent Care feeling like this, they ran the same kinds tests they did for your mother on me as well, and they came back normal -- no pneumonia etc. But almost always for me my WBC was low and a few times I did have ear and/or sinus infections and once last April I had shingles.

I would be prescribed antibiotics for the ear or sinus infections or just as a precaution to prevent infection because the WBC was low, they would not help a viral infection. For the time I had shingles I was given acyclovir [Zovirax]. A few times when the WBC was really low my oncologist was called and my maintenance Revlimid was stopped temporarily until my WBC returned to acceptable levels. For me, WBC rarely ever gets back to what is considered the normal range.

You had mentioned that they ran the blood test for your mother. I assume a WBC was part of these test and ,if so, they would have been able to see if the levels were low enough to be a concern. Was anything mentioned about this? Being on maintenance therapy and having a recent SCT it is likely the WBC is low, but low enough to cause any problems? Her medical team would have to answer that question.

One of the reasons I track my own monthly lab results is that I understand what my “new” normal counts for me are being on maintenance therapy and post SCT and watch the patterns of how I feel and how my energy levels are. I know at what levels WBC starts to become a problem for my case, based on my past experience, and pass this information on to my Urgent Care providers and PCP when I see them for a problem. When I do have a problem, the best thing for me is to back off my daily activities a bit, avoid infectious environments, and get more rest till it passes.

This is just my experience though. The best thing is to talk about this with your mother-in-law's medical team next time you see them.

[kriddy]

Re: Can Velcade cause flu-like symptons?

by kriddy on Wed Jun 11, 2014 9:25 pm

Thank you so much for your reply, Eric. I really appreciate it. There was no mention of her WBC although she went to a different hospital as it was closer. She meets with her oncologist Tuesday and I will make sure it is brought up then, if not before, with him.

[kriddy]

Re: Can Velcade cause flu-like symptons?

by kriddy on Mon Jun 23, 2014 9:27 am

Just an update ... They still are not sure as to what caused these symptoms, but today we got great news. She is down to 0%. Paraprotein was 0%. Light chains normal and Bence Jones protein 0%.

First time in 9 months that I have cried happy tears. I know that she could relapse at any time, but right now this moment feels pretty wonderful ♥

[Beacon Staff]

Re: Can Velcade cause flu-like symptons?

by Beacon Staff on Mon Jun 23, 2014 10:42 am

Great news, Kriddy. Thanks for updating us.

Did you ever find out anything more regarding the flu-like symptoms your mother in law was experiencing? Did they resolve themselves on their own, or were they eventually diagnosed as an infection of some sort?

[kriddy]

Re: Can Velcade cause flu-like symptons?

by kriddy on Tue Jun 24, 2014 8:55 am

Yep, the flu like symptoms resolved all by itself. All her blood work came back fine -- white blood cells, etc. Only that she is lacking in potassium. Her oncologist has no idea what caused it, as there was no signs of infection. He said it could be possible that it was from the stem cell transplant in January?

[Beacon Staff]

Re: Can Velcade cause flu-like symptons?

by Beacon Staff on Tue Jun 24, 2014 9:42 am

Thanks for the additional information, Kriddy. It's always great when there are follow ups in discussions like this one.

Regarding the doctor's comment that perhaps the stem cell transplant was the source of the flu-like symptoms your mother in law experienced ... That's interesting.

Not having thought through the details a lot, it seems the doctor may have been referring to one or both of two possibilities.

One is something known as "engraftment syndrome." It's been discussed earlier in the forum in this discussion thread: "Engraftment Syndrome". It's also discussed in this Beacon news article:

Older Myeloma Patients Treated With Novel Agents May Be At Increased Risk For Engraftment Syndrome After Transplantation

The other possibility is somewhat controversial, but there are some physicians who believe that myeloma patients undergoing an autologous stem cell transplant can experience a form of graft versus host disease (GVHD), which typically is thought to be possible only with an allogeneic (donor) stem cell transplant.

This issue is also discussed in the forum thread about engraftment syndrome mentioned above.

Again, we're not completely certain these are the things your mother-in-law's doctor had in mind when he mentioned the stem transplant itself as the potential source of the flu like symptoms your mother in law experienced. But it seems possible that these things are what was on the doctor's mind, so we thought we would mention them.

They are also topics that haven't been mentioned for a while here in the forum, which is another reason we thought we'd bring them up.

[NStewart]

Re: Can Velcade cause flu-like symptons?

by NStewart on Tue Jun 24, 2014 1:31 pm

There frequently are posts about the development of an all over body rash about 1 month post autologous stem cell transplants. I experienced this almost exactly 4 weeks post transplant. My oncologist really didn't know what might have been the cause of it, but he thought that it might be a graft vs myeloma response. He took me off all of my medications in case I was having a reaction to one of them - no change in the rash. He sent me to a dermatologist who had no idea what had caused the rash. I used a topical steroid ointment and Benadryl for several weeks to manage the itching. Gradually it resolved.

There are so many things that happen to us as a result of our treatments that the doctors don't really understand. Unfortunately we have to live with these effects and hopefully find a way to relieve the discomfort.

Nancy in Phila