[Red 1956]

Al, 60 years old & newly diagnosed with myeloma

by Red 1956 on Sat Jul 29, 2017 6:22 am

Hello All,

My husband was diagnosed in June with multiple myeloma, IgG kappa, M-spike 2.87 g/dL (28.7 g/l), kappa-lambda ratio 50, 60 percent plasma cells, beta-2 microglobulin 2.8, No protein in urine, no lytic lesions on bones, no significant organ involvement. No high-risk factors in FISH analysis.

In April he had chest pain that felt like severe GERD. Went to his GP who sent him to a cardi­olo­gist just to rule out heart issues. He passed his stress test with flying colors, but the cardiologist noticed anemia plus high serum protein in his blood results and sent him back to his GP with a note to do electrophoresis to check for myeloma. Sure enough, there was the M-spike.

Turns out he had anemia and high protein also in 2016 and the GP only looked at the anemia (colonoscopy etc), so missed what was going on. While this delay did not seem to be a problem for my husband, it is very upsetting that so many people are not getting diagnosed until a lot of damage is done from this difficult disease. The GP then recommended we go to a local hematologist / oncologist, but instead we went to Sloan-Kettering, which is not terribly far away.

I would say one of the hardest things for us was telling our adult children, knowing the pain it would bring them. It is so very hard to get this diagnosis, but we are all doing much better now.

My husband is on Revlimid, Velcade, and dexamethasone (RVd) therapy, 3 weeks on and 1 week off per cycle. Each on week he goes in once for his 25 mg dex and Velcade subcutaneous shot. He is currently on the first week of his second cycle. His M-spike was down to 1.52 g/dL after the first cycle, so his doctor is happy that he is responding. He was told to expect 4-6 cycles of the RVd regimen and then an autologous transplant.

My husband has been very lucky so far. He is not having side effects and he has never felt sick from the disease. While we were still in shock over the diagnosis, he would joke that he was waiting for the doctor to call him up and say "Just kidding, you really aren't sick."

I feel almost guilty saying that because I have read this forum extensively and know that many of you have had to deal with rough stuff from this disease. I've also learned enough to not assume it's going to be easy for my husband just because it has been so far. That said, I am optimistic he will be with me for many good years!

Thank you all so much for what you have shared on the forum. I have learned so much and hope to contribute and help as well. I wish you all the very best as we continue down this path .

[Victor L]

Re: Al, 60 years old & newly diagnosed with myeloma

by Victor L on Mon Jul 31, 2017 9:02 pm

Hello Grace,

Sorry to hear of your husband's diagnosis. Most of us Beacon members have been in that situation.

I write only as a fellow myeloma sufferer and what I can say is that if only I had known back in 2012 the things I know now, I would not have worried half as much as I did! It looks to me that your husband has a very typical diagnosis and is already responding well to the same treatment regimen which I and many others receive. Although I have not personally received a stem cell transplant, I understand that this is still a frequently recommended procedure.

Keep in mind that much of what you read about myeloma on the Internet is based on historic results and may not always show the huge benefits from the exciting new drugs and treatments which are arriving all the time. You have every reason to be optimistic for a great outcome, and I hope you will share your news over the coming months and years.

Very Best Wishes from Victor L.

[Baldy4518]

Re: Al, 60 years old & newly diagnosed with myeloma

by Baldy4518 on Wed Aug 02, 2017 9:53 am

Al,

I have had myeloma for 8 years. I'm currently taking one treatment a month (Kyprolis). Hang in there. I went 3 years with no treatment. My current M-spike is 0.3 g/dL (3 g/l).

[Red 1956]

Re: Al, 60 years old & newly diagnosed with myeloma

by Red 1956 on Wed Aug 09, 2017 10:16 pm

Victor, I appreciate your comment about the worrying! It is a very hopeful time with all the new therapies. I will be headed over to the forum sections on transplants and will be interested in as much perspective as I can get.

Baldy, 8 years is great so far. I love to hear it.

All the best to both of you!

[Pepperink]

Re: Al, 60 years old & newly diagnosed with myeloma

by Pepperink on Sat Aug 12, 2017 2:17 pm

Hi Grace!

I was diagnosed three days before your husband, and my treatment was exactly the same, so I will look forward to following your journey!

So far, the only two setbacks for me have been a severe allergic reaction to the Revlimid, during the second cycle, and a persistent low white blood count (I just received three rounds of Neupogen in the hopes of overcoming this pesky problem). I can't have the Velcade until my count improves, so I'm only on dexamethasone. My response during the first six weeks was really good, so I want to get back on all the drugs I can!

One thing is clear from reading the many postings: Everyone has a different experience. Also, the doctors have a lot of weapons at their disposal!

Thank you for sharing your thoughts!

[SusanF]

Re: Al, 60 years old & newly diagnosed with myeloma

by SusanF on Tue Aug 22, 2017 4:56 pm

I too, have been recently diag­nosed with multiple myeloma, Stage 1 (April 2017). I was a 60 year-old active female, feeling great, went for her annual physical. I knew I had some osteo­porosis / osteopenia from a prior bone density test, except this year my internist insisted I start Fosamax (alendronate) since the osteoporosis had worsened. She strongly advised me to see an endo­crinologist just to make sure nothing else was going on. I was a little hesitant to do so, but made the appointment anyway.

Long story short, all blood work normal except for SPEP. Now follow up with hematologist, which was a normal history and physical and all lab results within normal levels except lambda free light chains (7500!). Within 2 weeks, my lambda free light chain level went up to over 11,000. A bone marrow biopsy showed 40% myeloma cells. Negative skeletal survey and PET scan.

Referred to a center in New York City and in May 2017 started on Revlimid, Velcade, and dexa­metha­sone (RVd). Within 3 cycles of RVd, my free light chain was down to 23! Just had stem cell harvest last week and plan is another 3 cycles of RVd, then an autologous stem cell transplant.

Needless to say I was in disbelief, scared, sad, unsure of my future. My doctor. explained that multiple myeloma is a manageable cancer, but being an RN for 39 years, I don't always believe doctors. My feelings / outlook go from optimism to pure fear and sadness, missing my old life, and asking "Why me?". I do a lot of reading and try to keep up with the latest news, drugs, trials, etc.

I know its going to be a tough year. I am afraid of the transplant and recovery and how long until I feel like me again. I am grateful for the good response without too many side effects to the RVd. It is good to know I am not alone and read a lot of wonderful posts. So thank you!

[Red 1956]

Re: Al, 60 years old & newly diagnosed with myeloma

by Red 1956 on Tue Sep 26, 2017 5:55 pm

Hi Pepperink - I hope that things are still working well with your medication. Boy, you just don't know what to expect on this journey!

Susan - Sounds like you have a good doctor that wanted you checked out even while you were still feeling well! I can understand your concern about the transplant. I have the same concern for my husband - making someone that feels well feel sick even though it's temporary. My wish for you is that you weather it well and get back to feeling well quickly.

Look forward to hearing of both of you making progress!