CancerCompass message board discussion started by Clammy on 2/10/2008 http://www.cancercompass.com/message-board/message/all,20790,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all....My Mom was dx, 10/06 with stage 4 mm.  Since then, has had 5 rounds of Revlimed putting her into "partial remission".  Now levels are up and docs just started Veldade.  Wondering what to expect.Also, Mom is planning on having stem cell transplant through Moffitt Cancer Center in Tampa, wondering what to expect with transplant if anyone could share.Thanks to allChris Clammy Sun, 10 Feb 2008 00:00:00 GMT  On 2/10/2008 Clammy wrote:Hi all.... My Mom was dx, 10/06 with stage 4 mm, since then has had 5 rounds of Revlimed putting her into "partial remission".  Now levels are up and docs just started Veldade.  Wondering what to expect.Also, Mom is planning on having stem cell transplant through Moffitt Cancer Center in Tampa, wondering what to expect with transplant if anyone could share.Thanks to allChrisGood Evening Chris;"Now levels are up and docs just started Veldade.  Wondering what to expect."My Velcade was administered on days 1, 4, 8, 11 of 14 days. I was off (rest week) for seven and then started the cycle again. They would start a saline I.V. for approx. 20-25 minutes then inject the Vel through a side port on the I.V. and then resume the remainder of the saline. The Vel was injected in approx. 15 to 20 seconds. One time a new nurse pushed the injection (less than 10 sec.) and it burned alittle in my arm. Other than that I had no adverse side affects."stem cell transplant"I'm scheduled for an auto-SCT later this month. If you aren't going in sooner I'll be more than happy to explain how I progressed. What type of SCT is your Mom having? And what is her age?"My Mom was dx, 10/06 with stage 4 mm, since then has had 5 rounds of Revlimed putting her into "partial remission". " Would you mind sharing more details about this? What were her numbers like at Dx? When was the last cycle of Rev? How low did her numbers get after the Rev? How fast did her numbers climb during the relapse? Has she done anything other than meds to combat the MM?Take care;Kevin  K. C. Sun, 10 Feb 2008 00:00:00 GMT IT is important to remember that everyone has a different reaction to each of the treatments, so what one person experiences does not necessarily mean that all will have the same reaction.  The two treatments that have been used so far are FDA approved and most patients have received some remission fro their use. The SCT, while more radical, has the same objective to put the patient in remission for a longer period of time, but again there is no certainty Some patients have gotten years of remission and some only a few months, and so far there is really not an explanation these variances.Moffitt has been doing SCT for several years and most are successful, that is the patients do get a period of remission. The research staff, doctors, PA's and nurses are generally very positive and will keep you informed of what to expect and where the patient is in the process. They have a white board in your room with a calendar that they use to lay out the schedule as well as the objectives they hope to achieve on that day. So you can monitor just what is happening very day compared to what is their expeditions staff will respond to requests for additional requests for drugs, etc to help with any specific issue that might arise, such as bone pain. If mouth sores become an issue, you will get your mashed potatoes directly into a vein. The staff is really good about answering questions and do not hesitate to ask Some of the rooms are equipped with two beds, one for the caregiver. Upon release you will either go to the Hope lodge, next door to Moffitt and the patient must have the services of a 24 hour care giver. If they can not get into Hope Lodge, (sponsored by the American Cancer Society) they will arrange for alternative housing near the research center, but again during that time there needs to be a 24 hour care giver. When the counts have reached their objective, they will release the patient, but for the next few weeks there will be the need to have blood work and infusions.While not a pleasant experience, I found Moffitt did everything they could to see that I had a successful transplant. Unfortunately, my CR period was only about 7 months, where as I had hoped for a few years. Everyone reacts differently and as of this point there is not a real good explanation as to why such variances.I trust that the Transplant goes well and you are able to achieve a long period of CR.    Stay Positive Wed, 13 Feb 2008 00:00:00 GMT  Good Evening Stay Positive;"While not a pleasant experience, I found Moffitt did everything they could to see that I had a successful transplant. Unfortunately, my CR period was only about 7 months, where as I had hoped for a few years. Everyone reacts differently and as of this point there is not a real good explanation as to why such variances."Were your numbers very high going into the transplant? Also, what have the Drs. offered you as far as maintenance therapy after the transplant?Take care;Kevin K. C. Sat, 16 Feb 2008 00:00:00 GMT My initial treatment was Doxil and Dex and the number came down after 4 cycles to the point where I could get the SCT. The process began about 6 weeks later after  very complete exam and then collection process. The M spike was .1 at that time. About 3 weeks later the transplant procedure began, which killed almost everything. The reintroduction process was  the most difficult part of the procedure Mouth sores, certain amount of bone pain, but in about 10 days they were able to release me to the condo close by and had to make one or two trips a day to the center for monitoring. The M spike ran between .1 and .3 during this stage.This was followed by about 7 months of CR, no maintenance drugs taken. Upon relapse Velcade worked well although the side effects were killers.The doctors at Moffitt suggested a reduce dose of Velcade since I was doind well, but my Hemotologist wanted to be more agressive to see if they could make the CR period longer. Really did not work that well, I should have gone along with the Moffitt recommendation.   With the relapse, I was offered three options, go back on Velcade, Revlimd or become part of a clinical study for a product that will competive with Velcade, although it uses a little different chemostry. Start the clinical trial next week  Stay Positive Sat, 16 Feb 2008 00:00:00 GMT Hi again Chris, FYI, my mom had a bone marrow transplant a few years ago. She had a low immune system and stayed at Hope Lodge which is on the Moffitt grounds. I was her caregiver during that time and she had to be cared for intensely for a month. Unfortunately, the bmt didn't make a difference. A lot could've been a factor. My father died shortly after the bmt and all the stress that went with that effected her which could've been why the bmt didn't work. MotherWMyeloma Wed, 27 Feb 2008 00:00:00 GMT "become part of a clinical study for a product that will competive with Velcade" Hi, I'm curious what the name of this medication is? Can you let me know? Thanks. MotherWMyeloma Wed, 27 Feb 2008 00:00:00 GMT Hi Chris, I posted this earlier but for whatever reason it didn't post. My mother also goes to Moffitt. I was wondering who your doctor is. My mom sees Dr. Alsina and has been seeing her for about seven years now. My mother had a positive response to Velcade. It even put her in remission for a while. Downside was it effected her vision and she is legally blind now (the fact that she also has glaucoma could've contributed to this but Velcade is known to cause visual problems). When the disease became active again, her doctor put her back on the Velcade but it didn't work. She's now on revlimid which has helped her combat the Myeloma (her Igg's came down eighty percent) but her WBC and platelet counts have been dangerously low. She's had neupogen injections daily and platelet transfusions at least twice a week. Wondering how many cycles of revlmid your mom was on and why did the doctor stop it? Did she experience low WBC and platelets? MotherWMyeloma Wed, 27 Feb 2008 00:00:00 GMT