I was asked to give my portal and pass word, to someone in this organization!! I am so happy with this company it more help than I ever got from my worker at another company! Why am I writing this, because my family says it's against the law, and who knows what they will do with it, can anyone tell me what is going on? Honest I have been scared so so so many times I am afarid, now being sick thinking isn't my first choice, but I don't want to lose this. Can I get some reply's? Thank you.

Hi all, I’m in my 2nd month of induction therapy and revlimid has been a nightmare! I started at 25mg but it made my scalp itch and burn and the skin on my chest and back sensitive to touch. I’ve since had the dose reduced to 15mg it got a little better but I don’t think i can do this for 4 cycles! I’m also getting palpitations. Has anyone had this and switched to Pomalyst? Anyone taking pomalyst instead of revlimid without side effects? Thanks!!

Hi all, I had my ASCT in Jan 2024 and have been on Revlimid/dara maintenance since. Now I have found (after an suspicious mammogram and subsequent breast biopsy) that I have Ductal Carcinoma In Situ. I will need to meet with a surgeon to discuss options. From what I have read most folks who have DCIS have a lumpectomy, several rounds of radiation and go on hormone blockers for a period of time. It is very successful and some say curable. However, talking with my MM oncologist she suggested that if I have a mastectomy I may not need any of the other treatments. With everything myeloma brings she was suggesting in the long run it might be an easier way to go. One less thing to think about and no worries about what the radiation and hormone blockers are doing. Has anyone had DCIS and MM at the same time and what were your treatments and outcomes? Thanks. Judy

My husband's chemo did not work for his MDS and he does not qualify for a transplant. He was given 1-3 years but he has just given up. He has fallen twice now and I cannot get him because of my health issues. He fell getting out of the shower this morning and I had to call 911. I am going to make an appointment with out trustee to see if we could get help getting a walk in shower.

Shoulder pain My left shoulder has been paining since about 2 months, i visited the PT and he seems to think it is a muscle pain. I have been doing various exercises but of not much help. As the pain has been there for about 3 months, i am worried it may be due to bond damage due to myeloma. Wanted to check of bone related pain symptoms? Is it very painful? Consistent throughout the time it started? Any other description of the bone damage related pain would help me.

Anyone have any issues with a nerve from the back going down to the right thigh and causing numbing, burning feeling in the right thigh as well as some pain. My doctor said there's degenerative disc issues and slight arthritis in the back, what have you done to resolve this issue, Thanks

I was recently diagnosed with Chronic Lymphocytic Leukemia ( the middle word may be misspelled). Ivam interested in connecting with others who also have CLL. Where do I go to connect with a CLL Group? Thank you.

Has anyone had issues postoperative kyphoplasty? I had one done and have muscle tightness along side the area.

I was diagnosed with MM in November of 2023, after months of back pain. After induction I had a stem cell transplant in July of 2024. I'm currently in remission and on a revlimid maintenance regimen. I've noticed in the past month an increase in muscle cramps. In addition to legs/foot cramps at night, other muscles will cramp when I stress them. For example, if I do any abs exercises my abs will cramp. Likewise if I do bench presses. Has anyone else experienced this? My doctor has suggested increase electrolyte intake, but I'm not seeing any relief.

I’m a 77 year old female - Violet! I went with middle back ache to my GP in November 2015. Fortunately I’d been with the practice for about 25yrs and the doc knew me well. She arranged blood tests, discovered I was aneamic & that my haemoglobin was very low, and arranged for me to be admitted to hospital where more tests were done, including a bone biopsy, and I was diagnosed with Stage 3 multiple myeloma - which I’d never heard of before. It was quite a shock to realise that my backache was caused by myeloma. I had a 3 week cycle of chemo, and was on my rest week during which I became very unwell - couldn’t get up out of bed! More hospital tests and it was discovered that my liver was grade 4 toxic! And so I had to stop chemo, but miraculously the myeloma cells were killed. I had 8 glorious years in remission. And my liver recovered! I My focus during recovery was living life to the full! I meditated each day on wellness, did reiki on myself, and had an active social life. But throughout I did’nt deny I was ill. When I was weak I watched dance videos - all sorts of- jive, salsa, tango, swing, & line dancing. (and still do) So I immersed myself in dance and my body would move when even in bed. In January 5th 2004, after several months of low grade pain in my left thigh - I thought I’d strained a muscle (I was going to Silver Circuit classes twice weekly. The pain in my left thigh became acute and the femur fractured. I had an operation the next day to insert a titanium rod in my thigh. I recovered very well, and I have monthly immunotherapy (daratumumab) However about 6 weeks ago I started getting low grade pain in my left hip & thigh and I’m now awaiting results of an ‘in out’ MRI scan of my entire pelvis. Who knows what the results will bring but I’ll continue to dance, do reiki on myself, meditate my way through it.

Diagnosed with MGRS/MM in October 2023. Four months induction with four drug regimen, Stem cell May 2024. Can't believe it has been a year. On Darzalex and Revlimid. I picked up a head cold on May 3, most likely an enterovirus or rhinovirus. This thing is evil. Hubby had it and 3 weeks later is still coughing. I am still coughing going on 8 weeks. I called oncologist a week ago and told him about cough. He scheduled an IVIG transfusion. 4 days ago I woke up with swelling on right side of face. The swelling became worse and worse So, yesterday I had hubby drive me to oncologist. NO appt. I just showed up. Oncologist (yes, he is a great physician), sent me for CT scan of head. I have a Parotid infection, so on antibiotics, two very strong antibiotics. The virus has morphed into an infection. Sorry for the long explanation. Here are my questions. Has anybody else been through something like this? Also, my oncologist says if this keeps up he is going to change my drug regimen. Are there other regimens for follow-up chemo besides Darzalex and revlimid. I believe they are treating aggressively because my FISH study shows 3 very bad chromosomes that put me at high risk of a double hit, or a secondary cancer. Thanks

I have MDS. I would like to touch base with other people with MDS and find out what there treatments are. Arthur kaplan

I have MDS WITH SIDE BLASTS.MY WHITE COUNT IS OK AND MY PLATELETS ARE OK. I TAKE A WEEKLY SHOT procarit. It supposed to stimulate the bone marrow.It is not working z. Any suggestions! Arthur Kaplan ask1836@gmail.com