Post-Chemo Side Effects

Hi all,

I am new to this site and wanted to hear some feeback from anyone in a similar position as my father.  My father was diagnosed in 2004 with MM, at age 71, and was treated with a cocktail of Thalidomide and Dex for 14 months.  While on that combo, he was a zombie, appeared drugged and out of it.  After treatment ended, his "zombie-ness" went away but side effects of neuropathy of the feet and fingertips remained.  His MM numbers improved and was in remission for about 2 and a half years.

This past July, July 2008, the numbers moved again showing he needed to restart chemo.  This time around, his cocktail was a combination of low doses of Velcade, Revlimid, and Dex.  He lasted 5 cycles of this, but with severe side effects of dropping of blood pressure when he stood up, fainting and dizziness, extreme fatigue and weakness, itchy scalp and skin, lack of appetite and taste, loss of 20 pounds in 3 months, loss of muscle mass... basically loss of quality of life - he has to use a wheelchair outside the house, with the ability only to walk a short distance from chair to chair within the house. 

He has now been off this cocktail for 1 month and these side effects have actually worsened rather than improved.  Has anyone experienced anything like this?  He is now in the hospital as they are checking for other causes of his continued side effects. Can anyone speak to having had a similar cocktail and can say when they started to feel better post treatment?  Thanks so much. 

Hi MMDad-

Your story sounds very similiar to our. My father is 72 and was diagnosed in January. He was started on Velcade and Dexadron for his MM. After his first few doses he was unable to walk, it was later determined he had spinal compression and needed radation in addition. He had terrible side effects from the Velcade swollen feet, weak, awful taste described as everything tasting like paint or metal, and toward the end of his treatment zombie like as you mentioned and extemely dizzy and fainting, he was taken off all high blood pressure meds. By the end of his treatment he was so weak we couldn't get him out of the house without the help of an ambulance assist to get him to the car. That's when the called off his treatment 4 doses shy of what they originally planned.

My father finished his treatment in August and we had to get him into a rehabilitation as soon as possible because he was so weak and just out of it. He also  lost 75lbs and couldn't keep in any food (diarhea). It was supposed to be a 30 day program and 90 days later, he just came home and is staying with me. I am happy to say he is getting better every day, learning to walk again and finally eating. The Velcade did it's job and got his levels way down, but they have now started to spike again and he will start Revlamid after Thanksgiving.

I hope your father starts to feel better. Hang in there!

-Anne

 

Hi Anne, Thank you so much for your message back. I see we have some common ground for understanding, unfortunately so. I'm happy to hear you dad is home and I hope you had a wonderful Thanksgiving together. Your story gives me hope of progress in the future. My father is at almost 6 weeks since going off Velcade/Revlimid/Dex... so I am hopeful in time we will see him regain his strength. I don't know much about Revlimid without the other drugs.. but from other posts I have read, it seems to have positive outcomes and limited side effects. All the best.