[meganmcgrane]

Diagnosed with multiple myeloma at the young age of 31

by meganmcgrane on Tue Apr 21, 2015 1:19 pm

A few weeks ago I was diagnosed with multiple myeloma after months of low WBC and high protein levels in my blood. A bone marrow biopsy was done and I was told it's not in my kidneys or bones, but it's in the marrow (which is 25% plasma), And though the blood work showed I wasn't anemic, that due to the plasma cells taking over the white blood cells, that could be defined as anemia.

Since two of the four characteristics were present, he was 100% sure it was multiple myeloma. He has recommended 3-4 months of RVD (Revlimid, Velcade, dexamethasone), followed by a stem cell transplant (which cannot be done locally). I have no bone issues / fractures and no protein in my urine.

I've been searching everywhere for information but find it hard to base my story on the stories of others, as most of the stories I see are people in their 50's-70's. I hate to think that there are more rare cases like mine, but am sure there are.

[TerryH]

Re: Diagnosed with multiple myeloma at the young age of 31

by TerryH on Tue Apr 21, 2015 3:20 pm

Hi Megan,

I'm not your age, so I can't really share a story that's relevant to your situation, but I did want to welcome you to the forum. You've found an excellent source of information and support, and you will find some people here close to your age. Fortunately, there aren't many people diagnosed with myeloma at your age, so you won't find many who can share similar stories, but there are some.

One important question I have for you is: Are you being seen by a doctor who specializes in multiple myeloma? A standard hematologist / oncologist can be helpful for helping you pin down your diagnosis. But, particularly if you are not far from a cancer center, it really would be worthwhile to consider seeing a myeloma specialist, which is a hematologist / oncologist who sees almost exclusively myeloma patients, and usually is doing research as well.

A myeloma specialist not only will be able to make certain your diagnosis is correct. He or she also will be up on the latest approaches to treating your disease, and also may be aware of clinical trials you could participate in that could offer you access to potential new myeloma therapies.

I also feel that myeloma specialists can be better at educating patients about their disease, but I suspect that varies from specialist to specialist.

Good luck and, again, welcome.

[meganmcgrane]

Re: Diagnosed with multiple myeloma at the young age of 31

by meganmcgrane on Tue Apr 21, 2015 4:24 pm

Hi Terry,

Thanks for the reply and the welcome!

My diagnosis came from a hematol­o­gist / on­colo­gist. I am having a second opinion done at Roswell Cancer Institute in Buffalo by a multiple myeloma specialist on Monday as well as meet­ing with a transplant specialist to see if that is the route to go. I just got the results of my chromo­some test and there were no abnormal chromosomes.

I'm anxious to hear what the doctors at Roswell have to say. My doctor here has never had a patient as young as me, so I certainly want to feel 100% confident about my treatment regimen before I start it.

[lys2012]

Re: Diagnosed with multiple myeloma at the young age of 31

by lys2012 on Tue Apr 21, 2015 4:42 pm

Hi! Welcome (unfortunately)

I was finally diagnosed with advanced myeloma when I was 32. I had been quite ill for a few years, going from specialist to specialist based on my symptoms, and no one could find anything wrong. I had a diagnosis of "possible multiple sclerosis" due to symptoms, but no positive tests.

I had blood irregularities but no one put it together until I got very ill with fainting and irregular heart beat and ended up in the ER after collapsing at work. My protein was through the roof, I was very anemic (blood transfusion level) and had a rarer issue called hyperviscosity. I had some bone spots, but kidneys were fine. I was sick enough to be admitted and start high-dose steroids while waiting for bone marrow to come back. I started chemo a few days later.

Any way, it's a long story, because you are right, myeloma is rare at 30. I am now 37 and doing ok, still living with myeloma but living as normal life as possible!

I think it just sounds like your doctor has caught it early before any of the organ damage is occurring. To me, that is a good thing, the sign of a good doctor. I don't think you need to rush in and start treatment and would also recommend a second opinion up front. Where I live, for early myeloma you would not take the two "novel" drugs (Revlimid and Velcade) up front. Maybe Revlimid, maybe Velcade, but they would like to hold back on some stuff for later.

Have you had myeloma specific tests called M-spike, and Freelite? This is one way they monitor myeloma progression.

[TerryH]

Re: Diagnosed with multiple myeloma at the young age of 31

by TerryH on Tue Apr 21, 2015 6:49 pm

Hello again, Megan.

Roswell Park has several myeloma specialists, including Dr. Philip McCarthy, who is very well respected. So they should be able to do a very good job of confirming your diagnosis and giving your guidance on what to do next.

It's great that your test results show no chromosomal abnormalities. This indicates that you are likely to respond well to treatment. Given that that's the case, and assuming your multiple myeloma diagnosis is confirmed, you may want to discuss with the myeloma specialist the option of being treated with a less intensive treatment regimen, rather than the three-drug RVD regimen. Something like just Revlimid and dexamethasone might be sufficient, and that way you could reserve Velcade for later.

Whether or not to do a transplant as part of your initial therapy is the subject of debate these days in the myeloma world. Especially for someone your age, and with no signs of your having higher-risk disease, I would say it's an open question whether you should have a transplant so early in your treatment.

You can find a lot of links to treatment and side effect-related discussions here in the forum in this helpful posting. Included in the list of links is one that will take you to all discussions related to transplants and transplantation. There you will find discussions of the pros and cons of doing a transplant early versus later.

Hope this helps a bit. Let us know if you have more questions.

[Cheryl G]

Re: Diagnosed with multiple myeloma at the young age of 31

by Cheryl G on Tue Apr 21, 2015 8:09 pm

Hello Megan,

You've gotten good advice from Lys and Terry. I just wanted to add one thing that may be important for you to discuss with your doctors, depending on your personal circumstances. More specifically, I'm thinking it could be relevant for you to discuss how the different treatments you might receive might affect your ability to have children in the future.

This is not an issue for most myeloma patients, given their age, but it may be important for you. So you should raise the issue with your doctors if it is.

I just checked and there are a couple of discussions here in the forum that may be useful for you to check:

"MGUS and pregnancy" (started Feb 4, 2014)

"Pregnancy after myeloma treatment? Anyone had a baby?" (started Dec 6, 2011)

One of the discussions also references this article which the Beacon published:

"Multiple Myeloma And Pregnancy," The Myeloma Beacon, Sep 27, 2013

I hope this helps a bit. Best wishes to you.

[Tracy J]

Re: Diagnosed with multiple myeloma at the young age of 31

by Tracy J on Wed Apr 22, 2015 8:53 am

Megan,

Welcome to the forum. Sorry you need to be here.

I was 39 when I was diagnosed with AL amyloidosis, a cousin to myeloma. I had an autolo­gous stem cell transplant at Boston Medical Center, where there is a fantastic amyloidosis specialty clinic. I recovered and had complete response.

Unfortunately, this only lasted about two years. Last year, at the age of 42, I discovered I had myeloma, and I'm now getting chemotherapy, directed by Dana Farber and administered at my local hospital. I'm pursuing an allogeneic stem cell transplant, but having trouble finding a match.

The auto stem cell transplant put me into menopause. Melphalan is very hard on the ovaries. Anyone with myeloma is not a good candidate for hormone replacement because it increases the risk of clot (pulmonary embolus and stroke). The myeloma itself does that as well, as does a mainstay of treatment, lenalidomide (Revlimid).

I talked a long time about this with my OB-Gyn prior to the transplant. She said women under the age of 40 have a "decent" chance of regaining ovarian function after transplant, but that the closer to age 40 a woman is at the time of transplant, the less likely she is to regain any ovarian function. That was three years ago. I'm not counting on any more work from my ovaries!

Interestingly, there's some data out there to suggest that leuprolide (Lupron) may help protect the ovaries during transplant. It's often given to menstruating women for transplant to make the ovaries "sleep" for several months peri-transplant in order to reduce the risk of significant hemorrhage when the counts are so low. But, by making the ovaries reduce their metabolic activity during transplant, theoretically they should absorb less of the chemo, thereby protecting them. Sort of the same idea as chewing ice during melphalan administration to reduce GI sores.

Please PM or email me if you want to talk privately.
Tracy

[meganmcgrane]

Re: Diagnosed with multiple myeloma at the young age of 31

by meganmcgrane on Wed Apr 22, 2015 10:02 am

Thank you all for the very helpful responses! Sorry to see that you are all here as well.

The tests that I have had so far are urinalysis, bone marrow biopsy, and full skeletal panel of X-rays. I don't recall M-spike or Freelite being discussed. My local oncologist has never treated someone my age with myeloma, either. I've very anxious for Monday to come around to see if the specialist at Roswell has a different opinion. I'm starting to feel like this really was caught early and I don't really need such invasive procedures.

I've had both the oncologist and my primary care talk to me about freezing eggs. I was unsure about having kids and this diagnosis makes me even more hesitant. I lost my mom to breast cancer when I was 29 and her battle with it started when I was 7. But I think it's a good idea in case I change my mind and decide to have a family.

[lys2012]

Re: Diagnosed with multiple myeloma at the young age of 31

by lys2012 on Wed Apr 22, 2015 9:45 pm

Not to get too far ahead with the "what if's," but since the topic did come up, my transplant put me into ovarian failure (that is what they call menopause under 40). I froze my eggs before my transplant and am now expecting (due in June).

It's a very personal decision, I am my myeloma specialist's only patient to have a baby, but she says I'm also the only female patient in her 30's!. She has had a few men father babies after transplant. It is really rare, and not much out there in the literature. My high risk OB says she has had one other myeloma patient (who was smoldering, so not post treatment like I am) and she is at a top high-risk hospital for labour and delivery and the maternal health specialist for cancer in pregnancy at that hospital.

Pregnancy has had no effect on my myeloma. It has stayed stable and been a fairly uneventful pregnancy aside from morning sickness :O

Good luck at your appointment on Monday. Try not to obsess too much over what the Internet says. Myeloma is a unique disease, and a lot of what is written doesn't apply to people our age with standard risk disease.

[meganmcgrane]

Re: Diagnosed with multiple myeloma at the young age of 31

by meganmcgrane on Thu Apr 23, 2015 9:08 am

Congratulations lys2012! It's very encouraging to hear your story. Wishing you all the best in the new addition to your family!