Velcade

I started taking velcade 3 months ago. I only took one treatment and my IGg has gone down to 700 from 1700 over the past 3 months. My doctor stopped my treatments after the first one. Is any one else taking this same treatment? Now that my IgG counts are so low my doctor says that they may have to give me something to help with my immune system. Has anyone else had any experience with this new drug? please let me know. thanks Darlene

Hi Darlene,
I've read several of the messages that you have posted on this message board and feel that your situation is the most similar to mine, except that I don't have MS. I was diagnosed in Sept. 2002 and was told that I had 2 years -- well, I'm now well past my used by date!! Seriously though, my levels are all starting to go up again after being stable for 14 months, so the doctor is planning to use Thalidomide. After reading your story I'm wondering if it would be better to go straight to Velcade? What do you think? This is my first attempt at a message board, so please excuse any mistakes!! I'd appreciate just 'talking' with someone else with MM as I can't find anyone in my rural town who also has this form of cancer. Many thanks, Cath

Hi Cath,
I'm sorry to hear your levels are starting to rise. It is my greatest fear these days everytime I go for my blood work. In response to your question about going straight to Velcade I'm not sure you will have that choice. I had to have tried and failed at two other treatments before I could be approved to receive Velcade. But that was several months ago so they may have changed the requirements now. Prior to Velcade, I had several conbinations of Chemo for 12 months and then I was on Thalidomide for 14 months before it stopped working. You will have to check with your oncologist as to what the protocol is for you regarding the treatment of Velcade. But I will tell you this if I had had a choice I would have chose the Velcade first. But that may not have been a good choice. My oncologist said it was better to wait and use it at a last resort at the time it came out. It was just approved then and we weren't even sure it would have worked on me. It's really nice to be able to talk to someone with the same diagnosis. Best of Luck Darlene

Hi Darlene --
My oncologist has approved me for the Velcade trial that they are doing here in Australia. I have to see the senior oncologist next week for the final OK. Can you tell me how the Velcade was administered to you and if you had any side effects? My paraprotein levels are currently going up by 4-5 points each month so I've gone on Thalidomide for one month until the Velcade starts. I'm currently at 25 and my oncologist says that 50 is generally when people start having major problems, though he always covers it by saying that 'everyone is different' so this is by no means a definitive number. Whatever! I just don't want it to go any higher and I'm willing to try anything at this point. I've already had two lots of different chemo's, radiation, etc which kept me stable for 14 months, so apparently I fit the current criteria.
Anything you can think of that you think I might like to know -- I'd really appreciate it.
Many many thanks,
Cath

Hi Cath,
Really glad to hear you are able to get on Velcade. The regiment for velcade they are using here in the USA, I'm in Florida is 8 IV treatments over a two week period. Then no treatment for two weeks and then the cycle starts over. Usually it is givin for 8 months. But in my case I only received the 8 treatments and my IGg levels dropped so fast they stopped the treatments after the first two weeks. That was in April 2004 and my IGg counts have been within normal limits ever since. I just had my 2 month check-up with my oncologist on Friday and he is amazed at my continued recovery. Dr. Sorathia is my oncologist at the Regional Oncology Center in Daytona Beach Florida. He told me that the Velcade is working better than the transplants. The only side effect I had from Velcade was a small amount of neuropathy and it was from my MS. However it went away after the two weeks. The Velcade only took about 30 mins to infuse IV and I went shopping and out to lunch after. I had more trouble and side effect with the Aridia I was taking than with the Velcade. I believe in my heart that you will be fine after you take the velcade. I am here if you need to talk. As for your paraprotein levels I am unsure about those,we don't use those for checking my levels. We use IgG totals, Kappa/Lambda Ratio, Kappa Light Chain Anal, and Lambda Light Chain. Do you ever get tested for these counts? I wonder if you testing is the same just using different scales? You can find out what the normal range is by calling your Doctors nurses. Also are you getting copies of your lab results each time? If not just ask the nurse for copies and get them at the time of your visit. Keep them in a folder. It a good way to keep track for yourself. I hope your treatment starts soon. It is nothing like Chemo it is more like getting saline fluid. You will be amazed at the difference between it and Chemo. Keep Well and Keep In Touch.

Sincerely, Darlene

HI
My mom was just diagnosed with MM and is going
to start Velcade in the Phase 11 study for newly
diagnosed patients. Your comments were very
encouraging to me as we are all wondering how
the treatment will effect her. I know every
case is different but thanks for the information
on your treatment. I was just wondering your
age? My mom is 73.

Linda

Dear Linda,
I am sorry to hear about your mom. My age is 53 and was diagnosed when I was 51. But I am glad that they are starting Velcade with newly diagnosed patients. I wish I had been able to use it as my first treatment. Would have saved me alot of pain. My counts are still within the normal range and I am doing great. From what my oncologist has told me that they are now discovering that Velcade is working much better than the stem cell transplants and a lot less invasive. It will be a yearin April since I had my one and only treatment and I am supprised with the results, considering what I had been going through 2 yrs previously. My IgG levels were @ 8000 + and now they are holding at 800. The Velcade treatment for me was like a walk in the park. Also because my system doesn't tolerate high doses of medication they gave me the lowest possible dose. I amazed the team of my doctors that the low and single dose worked. My thoughts and prayers are with you and you family, please give your mother a big hug and a smile from me and tell her I said hello. Sincerely, Darlene

Dear Darlene,
Thanks for your support. My mom now has had three treatments and her major side effect has been fatigue. Her type of MM is IGA and I am not sure that is the same as yours, you sound like the IGG but I am assuming it it pretty much the same. After one more treatment she will have her 10 day rest which she is looking forward to. She also has to be monitored because she has had open heart surgery is on cumadin so her blood thickness has to be just right. I hope your levels stay stable and this drug has positive results so everyone can use it. Thanks again,
Linda

Hi Darlene --

Just thought I'd let you know that I'm starting Velcade on Monday. They are giving me injections twice a week for two weeks, then a rest week so its a three week cycle. Have you heard from anyone else who has had Velcade? I can't seem to find any others who are talking about it. Your results are what has spurred me to following through and getting onto using Velcade. I certainly hope that my results are like yours. Many thanks, Cath

Darlene and Cathy
You might already know this but there is a good article about MM and velcade in a magazine called Cure. You can get a free subscription at curetoday.com. It is the Winter 2004 issue.
Linda