[wolverine]

Young people with multiple myeloma

by wolverine on Tue Feb 18, 2014 12:43 pm

Hi everyone,

My husband (35) was diagnosed with multiple myeloma 3 years ago in march. I´m a little foggy on the details but i remember that his m-component was over 60 ( i think - may have been 80).. anyway.. You have to excuse my English.. I live in Denmark and have no idea what most of the medical terms are in English.. I have, f.e., been scratching my head about the difference of "smoldering multiple myeloma", MGUS, etc.. not to mention all the plasma and immunoglobin details.

We found out after months of severe back pain and general discomfort. Just before his diagnosis he didnt function anymore because of pain and he self said that it felt as if his body was just giving up! After he was diagnosed, MRI showed vertebrae had collapsed in two different places in his back. Basically, he had broken back in two places and ended up loosing 6 cm of his height.

He had 4 rounds of Velcade, followed by high doze chemo and stem cell transplant and went into full remission. Until now!

Even though the m-component was "only" measured at 2.5, our doctor (our first time with her, fyi, and we get relapse news!) had a very serious conversation with us, talking about what possible next steps might be IF the m-component keeps rising etc.

Besides the huge "bitch slap" (pardon my french) of getting news of relapse, I (or we actually) feel so lost and completely unsure about what to do with these information. What does it mean? Is he sick again? All other numbers were good. It was only the m-component that suddenly popped up.

And as my husbands way of coping was to put his trust on his doctors and not ask too many questions about the disease, I haven't asked the doctors in too much detail about certain things like: How often can people go though high dose transplant? Doesn't the disease become immune to the meds? Or is there just no way to tell.. as with everything else when it comes to this disease?

We are in the middle of IVF process to try and have another child, as the high dose treatment left my husband sterile. We have a son (age 6) but dream of giving him a sibling.

I refuse to give up to this /$&/# disease and luckily my husband is one of most positive, logical and optimistic person I've ever met - and not about to throw in the towel. I believe that those qualities help tremendously when it comes to recovery.

Sorry for the rant.. I know I am all over the place we only got the news today and I am in shock! Somehow I didnt expect remission to hit us so soon.

I'm curious to see if there are many others our age (35) active in this forum - if so please contribute. Of course it doesn't mean that others cant.. I just feel so alone in this situation. The only other multiple myeloma patients we've met in Denmark are nowhere near us in age and therefore difficult to talk about and share experiences.

[lys2012]

Re: Young people with multiple myeloma

by lys2012 on Tue Feb 18, 2014 3:10 pm

Hi I am 36 and was 32 when I was diagnosed also. I live in Canada. My husband and I are doing IVF to try and have a baby also, but in our case it is because SCT put me in chemo menopause. I know what it is like to be the youngest myeloma patient in the room! I have seen a few other people my age at the hematology appointments recently. I am involved in a group for your adults with Cancer, of course I am the only one with Multiple Myeloma. More common in our age is Breast Cancer, and lymphomas. I recommend seeking support from a mixed diagnosis group like that. Since it based on age, many of us deal with the same issues after cancer (family, work issues etc)

I haven't had a relapse I pray for a very very long remission, so I can not begin to even imagine what that feels like, especially once you are living like a normal person again (trying for a family) it must be really really hard to hear that news

[wolverine]

Re: Young people with multiple myeloma

by wolverine on Tue Feb 18, 2014 3:47 pm

Thanks Lys2012!

Somehow it means a lot to know that there are others experiencing the same out there. I find it difficult to talk about this with my family (parents + siblings) and friends. I tried getting into a support group here in Denmark when my husband was first diagnosed but it proved incredibly complicated so I didn't really pursue it. Maybe I will now.

I need to talk about all this with someone who relates and that's why this forum seems like a good idea. My husband has a completely different tactic of dealing with this. I need to talk about it and understand what's going on. He puts his faith in that the experts know what they are doing and tries not to think about it too much. So of course, I try not to bother him too much with my concerns, because I'm afraid I´ll end up dragging him down with me. At the moment it's a "wait and see" position we're in. More blood tests, urine tests and MRI next month. Until then .. just trying to ignore the giant elephant in the room. This sucks!

[Mattias]

Re: Young people with multiple myeloma

by Mattias on Tue Feb 18, 2014 6:03 pm

Hello Wolverine

I was 39 when first diagnosed with a solitary plasmacytoma in 2009 after a fracture of my left femur. Two years later I had another plasmacytoma in vertebra L1. Now I'm finished with four rounds of Velcade, Cyclophosphamid and Dexamethason. Soon I'm going in for high dose chemo and auto SCT. I have two sons at 10 and 12 and and a very supportive wife. Don't lose hope because there are plenty of treatment options today and research is done all the time to improve treatments. I live in Sweden so we are practically neighbours....I can totally relate to the fact of being the youngest around with myeloma at my clinic.

Hilsen fra Mattias i Sverige

[Helga]

Re: Young people with multiple myeloma

by Helga on Tue Feb 18, 2014 7:37 pm

Hi wolverine,

I was also 32 when diagnosed (well, went into hospital on my 33rd birthday and came out a month later on chemotherapy).

I'm in a similar boat in that I had 4 cycles of Velcade based treatment, a good life off drugs in remission and am now dealing with the unpleasant reality of remission much sooner than hoped. Fertility etc has also always been one of my key concerns (I don't have kids) which as you say is not a common issue with myeloma patients. I've read Lys's posts before with interest.

Personally I find it very helpful being in touch with other younger people in the same boat. It's (obviously) not like all the stories are happy, but it does help seeing people who've walked the same road you're walking. It also makes you realise the massive spectrum of responses. I know a guy at the hospital who was diagnosed aged 34 and had a 7 year remission and then a 10 year remission (I'm jealous now!!) Equally I've seen people having a tougher time but still doing OK despite it all, taking longer to respond to treatment or having two SCTs and still being here today enjoying life etc etc.

Your English is great! I used to work for a Danish company but only learnt the words for 'large beer' and 'small beer'...

Sorry you've having to go through this, it sucks.

[ivanm]

Re: Young people with multiple myeloma

by ivanm on Thu Feb 20, 2014 5:40 pm

Same here - diagnosed at 37, now 39, ah, almost going on 40. One kid - 5 years old. My personal dream and goal - see my son marry. Please see the sticky post I just added on this forum. Maybe something there will help. As to trusting the doctors, you absolutely should, but with a grain of salt. It is your husband's decision and life - nobody else’s. If you go to a transplant doc, they may push you into a transplant. If you go to a center that does a specific trial, they may recommend that trial but nobody else’s. I do not mean to imply that doctors are not selfless when it comes to decisions and recommendations, but considering the high stakes (i.e. death), it is the patient's job to know as much as possible. Know the drugs, know the trials, know the protocols, know as much as you can. One caveat, do not drive yourself crazy. Knowledge should not come at the expense of making your life miserable. Good luck.

p.s. as a young guy, he should make the effort to keep at sports or other things he loves, if he can. I still hit the slopes on my snowboard at 40 miles/hr over my doctor's objections. I still race my motorcycle on the track. I'll keep doing it while I can. Oh, and I had 80% bone involvement when I was diagnosed. That's close to dying as you know. So I guess I've been lucky. We all need some luck.

[lys2012]

Re: Young people with multiple myeloma

by lys2012 on Fri Feb 21, 2014 12:47 am

I like your attitude. I also go snowboarding, and while my old doctor agreed with "living a little" my new doctor somewhat cringed when my husband said we were going snowboarding. He just "felt she should know who she is dealing with" lol. She told me I'm her only snowboarding multiple myeloma patient.

I have been riding since I was 15 though, so maybe I would not recommend learning this sport after a multiple myeloma diagnosis! Learning curve involves a lot of falling

[Dr. Edward Libby]

Re: Young people with multiple myeloma

by Dr. Edward Libby on Sat Feb 22, 2014 9:46 pm

Greetings from Seattle!

As one of the myeloma doctors who contribute to this Forum I want to address your direct questions about the disease.

Patients can have two stem cell transplants for multiple myeloma. This is done fairly often when a patient has a long remission from the first transplant (usually at least two years). As a general rule of thumb a patient will get less effect from the second transplant -- perhaps lasting only half as long.

It is true that myeloma becomes resistant to medications over time. The more treatments and relapses a patient has, the more resistant the disease becomes. Fortunately your husband has really only had one course of treatment (induction therapy + transplant is considered a single treatment) and so there are potentially a number of therapies available for him.

In fact using the Velcade again would be an excellent treatment for his relapse since he responded initially to Velcade. Of course there are limitations to the drugs available depending where one lives and the health care system. One way to have access to the latest drugs is to participate in clinical trials and so I encourage you to find out what is available in research studies in Denmark.

I wish you and your husband the best in your fight with this challenging & difficult disease.