My dad was diagnosed Multiple Myeloma this summer. He is going to be starting his chemo and stem cell transplant this month and I am curious as to about how long did it take before you starting feeling better? Ive googled and read the papers that the Dr gave my dad but it would be nice to hear from other patients and family members their experiences. If the stem cell transplant is successful do the bone lesions ever really heal or will he continue to have bone pain? Thank you so much
My boyfriend was diagnosed with MM in February 2014. He had chemo for 4 months (Revlimid, Velcade & Dex) and had a SCT in August. His SCT was done outpatient. He checked into the hospital 2 days prior to the transplant and was given high dose chemo both days. On the third day, he received his stem cells and was released from the hospital about an hour later. The next 2 and a half weeks was spent going back & forth to the hospital everyday for 5 hours of monitoring & hydration. On Day 8, he developed a C-diff infection that resulted in Colitis. He spent 5 days in the hospital on antibiotics. He returned to work full-time 6 weeks after his transplant.
Please keep in mind that every case of MM is different.
As far as bone pain, he gets Zometa infusions.
I will keep you & your Dad in my thoughts and prayers.
Hi Rosies Mom, I started treatment nearly 2 years ago, 4 months chemo then stem cell transplant and then 4 months of consolidation chemo. In my case, I had bone pain only in my arm when trying to lift something heavy or open a tightly closed jar. In my case, this pain disappeared after the 2nd month of chemo. I should mention that along with the chemo, I was given a monthly infusion of a bisphosphonate (like Zometra) to strengthen my bones - not sure if it was the chemo or the bisphosphonate that helped, but in my case the result happened quickly - even before the stem cell transplant. As I understand what I was told, the bone lesions will pretty well fill in although they will show up on scans as less dense than surrounding bone.
I'm happy to say that 16 months after stem cell transplant, I'm still in complete remission and just returned from a brief ski holiday in the Austrian Alps. So there's good reason to be hopeful and optimistic - life CAN return to normal, just tell Dad to hang in there with the treatments and transplant. In my particular case, I really only had about a month when I was out of commission, during & immediately after the transplant. Tell him to eat healthy (lots of fresh fruits & veggies, whole foods) and DRINK LOTS OF WATER, at least 2 quarts per day. That will help his body cope with all the stuff it's going to be bombarded with. God bless.
Thank you so much for your replies My dad has pain in is hip, leg and ribs. He has been doing chemo and had radiation which helped a lot with his pain. With the winter we get in Canada the cold is making him sore again. I am hoping that when he finishes the treatment that his pain isn’t as bad. He gets his Central line insertion on the 11th and I am praying that he takes the transplant well. It’s nice to see that there are people that have lives after treatment! I am hoping the same for my dad!
I was diagnosed with MM on 12/1/11, underwent 6 months of chemotherapy followed by a stem cell transplant on 6/26/12. I had the chemo drug Malforen and chewed on ice the entire 3-4 hour process to prevent mouth sores. My transplant took place the following day, and I was discharged to my apartment near the hospital. Exactly 5 days later I became very ill with an elevated temperature of 101, very weak and feeling sick. I was readmitted into the hospital where I stayed another 10 days, was discharged to my apartment only to go back in the following day. My temperature went up to 101 again, vomiting and blotched all over. Stayed another 2 weeks and finally discharged to home. I had only 1 other difficult time at home with dehydration, otherwise was back on my feet I would say about 3 weeks while home. I had a terrible taste of salt in my mouth and had trouble eating and drinking water especially because of this. 14 days after receiving chemo all of your hair falls out, forgot to add this. I felt great once my energy level improved and even walked in Boston for the breast cancer walk for 7 miles. I felt great, walked and rode my bike whenever possible. In November, my Oncologist wanted me to take chemo for an additional 2 months to keep me in a deeper remission and I remain in remission. What I will tell you is each person is different, what happens to one person isn't usually the same for the next. Make sure he is balanced nutritionally, physically and mentally because the entire process is a lot. I will pray for him and wish him the best.
Every MM patient is going to have a different time frame. It took about 6 months for me to get fully back. As far as bone pain, I guess I was one of the lucky ones, as the lesions were all on my skull, and I had very little actual pain, so I can't speak to that. I will keep you and yours in my thoughts and prayers. Good Luck!!
Hi iam Rosie’s dad I’ve been reading through the replies and am feeling a bit better iam going to be starting my G-CSf injections this week and was kind of scared if I would get that sick or if it would hurt lots ,but after reading the replys I will kind of know what to expect thank you guys for the support and I will do my best to brave it I’ve got my children and grandkids to look forward to and a reason to live for. Thank you.
Let me add that Janet was SO right to write about the importance of chewing on ice before, during and after the melphalan infusions that precede stem cell transplant. I did the same thing - started 30 minutes before the infusion began , all during the infusion and continuing for 30 minutes after - and had no mouth sores at all. I'd read about this on one of the MM blogs and insisted on having the ice. Based on my experience, the hospital I was at is now encouraging all their SCT patients to do the same. (in some cases, those mouth sores can become quite severe). So PLEASE Rosie's dad - do yourself a big favor and make sure you'll have cups and cups of ice chips to chew on. And even if on the 2nd day of infusion you're experiencing some nausea, still make yourself chew that ice. it will pay big dividends in your recovery.
Also - as we all keep saying, everyone reacts differently. I was worried in advance about nausea but it wasn't nearly so bad as I'd feared. I had 2 days of vomiting, but once I brought up what was in my stomach each time, I felt fine. The docs and nurses were great about monitoring this, and increasing the anti-nausea meds as needed.