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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

how long before side effects of treatment show up

by torimooney on Mon Oct 22, 2012 4:30 pm

How soon does one feel the full side effects of their treatment?
I started my initial treatment for multiple myeloma , doxil, Velcade and dex. last Friday. How long before I know what side effects I will experience. After one treatment I’ve had no major problems but I did get insomnia and awoke irritable for two days. Today I feel pretty normal and slept well last night. I get 40 mg of dex twice a week and this dosage has me scared. Will my insomnia and irritability get worse the longer I take it. The protocol is twice a week for two weeks, then off for two weeks. I understand the doxil causes hair loss in some people and that usually occurs between day 15-25. How about the peripheral neuropathy the Velcade can cause? When will I know if I will get that side effect? I appreciate any input.

Name: tori
Who do you know with myeloma?: myself
When were you/they diagnosed?: apr 2012
Age at diagnosis: 64

Re: how long before side effects of treatment show up

by Anonymous on Tue Oct 23, 2012 4:47 pm

I would not worry to much about the Dex, Your dose of Dex is higher for only a few days a week, with long break times. The days you have to take it I would get up early in the morning and take the pills then go back to sleep for a few hours. so that you can try and mitigate the insomnia wich is worse if you take it later in the day since it is in you system longer. I had grumpiness (I am not a morning person to begin with!) the dex days, and a bad sweet tooth! but in my case I've had an egg allergy for long time and can't eat most baked stuff, when I was taking the dex is blocked my allergy and I was able to eat stuff I normally can't so maybe I indulged more! I gain weight from it but have almost lost all the weight now with some hard work. My dose of dex was 40mg daily, 4 days on, then 4 days off for months!

Velcade i started to get Neuropath after my third month on it, and I did have a few reduced days when my counts were low. I did not have many side effects other then fatigue/ flu like symptoms / dizzyness. The major one for me was constipation, which sounds like it shouldn't be that bad, but after two weeks and not one BM I was sent to the ER! It was an ongoing issue and I had to take storng laxatives throughout and they would not always work.

I never took Doxil so I can't comment!

I think you should be ok, the more intense chemo for stem cell transplant was much worse in terms of side effects for me.


Re: how long before side effects of treatment show up

by Christa's Mom on Tue Oct 23, 2012 5:32 pm

Hi Toridon,

EJ's experience with Velcade and dex pretty much mirrors Anonymous. There are lots of posts in these forums about the side effects of the evil dex! Most people develop a schedule that works for them. EJ liked the extra energy he got, so he took it when he got up in the morning and then just worked late at night.

One thing to keep in mind with Velcade is that it can bring on shingles. If you have not had shingles you may want to talk to your doc about it.


Christa's Mom
Name: Christa's Mom
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September, 2010
Age at diagnosis: 53

Re: how long before side effects of treatment show up

by Anonymous on Tue Oct 23, 2012 6:26 pm

My fathers initial therapy is Velcade and Dex(40mg).In general- Dex 320 mg during 3 weeks,1 week off.On his first cycle he couldnt sleep(strong heartbeat,his pulse was 110-120!)We decided to reduce the dose of dex ,taking it on the day of Velcade(20 mg),and the day after(20 mg).Now his heartbeat is ok! Is 20 mg of dex so effective as 40 mg? Can we continue to take dex (20 mg) without doubt in efficiency of such low dose?Are there any studies on safety and efficacy of dexamethasone (20 mg versus 40 mg?). At what dose people take dexamethasone (initial treatment) in Europe and America?Share your story of taking dexamethasone(dosage),please.


Re: how long before side effects of treatment show up

by Eric Hofacket on Tue Oct 23, 2012 10:28 pm

I felt the effects of dex right away. The first couple of weeks on the day I took the dex I would get no sleep at all and often none the second night as well. It was not just having difficulty sleeping, I did not sleep. Appetite also increased right away as well. In time I eventually was able to get sleep better and even get a few hours on the dex nights. On dex days when I had my pulse checked it would sometimes be as high as 110 when resting, much higher than my usual 55 to 70.
The first night I had Velcade I had a strong tingling vibrating sensation across my chest and arms. I had never felt anything like it before and the nurses said they had never had anybody ever report that. I did not notice any side effects again while on Velcade in the first couple of cycles. Then one night I woke up and it felt like somebody hit me in the back of both calf muscles with a baseball bat. The peripheral neuropathy came out of nowhere. That first night was the worse but there were other nights that were nearly as bad. The pain would go away considerably in the day time but would get stronger at night. The leg pains eventually extended up to my knee and the morphine only helped moderately. Eventually food started losing its taste, everything tasted like cardboard. I lost appetite and stopped eating, losing about 40 to 45 lbs before I had my stem cell transplant. I also developed an orthostatic blood pressure condition where my blood pressure would drop to 68 over nothing and I would black out when standing up, which landed me in the hospital. I had to stop the Velcade and dex at this time, but had achieved a very good partial response. It has been about 16 months since I stopped the Velcade and dex and nearly all the side effects of Velcade are gone except some mild peripheral neuropathy in the feet and hands that I can live with and do not need any pain killers or other meds for. Most people do not have as sever effects of Velcade as I did.

Eric Hofacket
Name: Eric H
When were you/they diagnosed?: 01 April 2011
Age at diagnosis: 44

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