[elizabeth104]

28 Female - Borderline MGUS / smoldering myeloma

by elizabeth104 on Thu Aug 30, 2012 8:09 pm

I was diagnosed with MGUS when I was 25 years old. I am 28 now. My story:

Three years ago I was having a series of symptoms - joint pain, headaches, fevers etc. and was put through an extensive amount of tests through my PCP as well as a rheumatologist. Most of these tests came back negative and were inconclusive. The only significant finding was that there was an excess amount of protein in my blood. I, of course, googled this and only found Multiple Myeloma. I was sure I didn’t have THAT because I wasn’t a 70 year old man! I was sent to a hematologist who indeed diagnosed me with MGUS. As I’m sure you know, the only treatment for MGUS is “watch and wait” AKA careful observation - a terrible “treatment” for a stress case like me!

Shortly after my initial diagnosis, I was able to start seeing a great hematologist/oncologist at Dana Farber Cancer Institute in Boston. For my first appointment I had to do the dreaded 24 hour urine collection, skeletal survey, PET CT, plus a million blood tests. Everything looked good and with my M-spike so low (it was only .19 at the time) he felt comfortable monitoring me every 6 months as well as holding off on a bone marrow biopsy for the time being. For the last three years these appointments have been more of an annoyance than anything – lots of blood tests and urine collecting (gross I know!). I have not been too concerned as my prognosis was good (low Mspike, IGG protein, light chain ratio was fine, other blood tests seemed fine). However, it was concerning being only 25…I had a lot of years left to live, and ultimately, a lot of years for the MGUS to possibly progress.

Skip ahead to this past April. At my usual 6 month appointment, I discussed the possibility of becoming pregnant and starting a family since I got married last summer. At the time, I had no real reason to believe (it really hadn’t crossed my mind, to be honest) that the MGUS would be any sort of issue in this particular aspect of my life. My doctor was reassuring that I would most likely be fine to have children, however, he did want to do a bone marrow biopsy to check for the level of plasma cells. Plus my m-spike was slowly clawing up (from .19 to .36 – over 3 years, slow right? Right?? At least I thought so…). I was a little freaked out by this, but I knew a bone marrow biopsy was a test that would be coming eventually.

My doctor hoped that the plasma cells would be below 5% which would give me a green light to start a family. He actually said that he really thought I would be below 5% “knock on wood”. Then he also spoke of the possibility of pregnancy progressing my disease faster, which was obviously scary and something to consider.

I had the biopsy done (um OUCH, not a good time!) and my results were good, but a bit higher than we had hoped. I was actually called in to come into the office to discuss the results. I didn’t get the, “Everything looks great! You are cleared for baby making!” phone call I had been hoping for. The aspirate showed 3% plasma cells (some in atypical forms) and the biopsy showed 10-15% plasma cells within the area of the biopsy (however 6-8% plasma cells overall). Basically, my doctor said that I was borderline MGUS/Smoldering.

Baby plans have been put on hold for at least 6 months when I will have a repeat biopsy around December/January. I had a PET CT last week and that was totally fine. Although, I have read the PET CT can sometimes show a false negative and I really should have an MRI of my spine. I have always dreamed of having a family and being a mother more than anything else in life. I am trying to come to terms with the fact that this might not be possible or at least within my health's best interest, which is utterly devastating. Yet, I am trying to remain optimistic. Any one have any experience with pregnancy and MGUS/SMM? Most of the things I have read have not been the most encouraging.

Some other things that I have been thinking about: Over the last 2 winters I have gotten really sick. Persistent cough from like November to April and a series of sinus infections and an ear infection. I also attributed this to the fact that I am an elementary school teacher and are around germy kids all day long! Now, I don’t know. Could be due to MGUS?

This May I got admitted to the hospital for a really weird skin infection. Took Infectious Disease and Derm to figure out what it was but I was given IV antibiotics before being seen by them. Upton assessment by the specialists I was was diagnosed as having shingles with a secondary bacterial infection. Then, two days later, the shingles culture came back negative so they said it must have been just a cold sore. Yes, a cold sore, all over my forehead. I have never had a cold sore in my whole life.

I have also had some cramping/tingling in my left leg since my biopsy… I had tingling last summer…my doctor said to use cocoa butter as an emollient. Hmm.

Wow, this was a really long post… sorry. Anyone have experience with numbness/tingling/cramping after a biopsy? Any tingling with MGUS / anything to make it better? Pregnancy and MGUS?

I would love to connect with other MGUS/SMM/multiple myeloma patients in their 20s or 30s! I have had a really hard time finding other young women in my situation....

[Anonymous]

Re: 28 Female - Borderline MGUS/SMM

by Anonymous on Fri Aug 31, 2012 12:20 pm

Hi I am 34 and have had Multiple Myeloma for 2.5 years, diagnsoed at 32, had it at least 2 years before my diagnosis I did 4 months of chemo followed by a stem cell transplant.

I have learned that doctors don't know everything especially stuff outside of their specialty! Don't rely on your cancer specialist to give advice about having a baby or not. Don't rely on people on this message board who don't really have expereince with this hard decision either because most have not been in this position to truly get how difficutl it is to face the possibility you may never have kids because of multiple myeloma.

The last thread I posted in about Fertility I felt like everyone started attacking me when I was posting stuff I heard from top specialists I consulted on this matter in my city so I'm not going to say much other then . I recomend you make an appointmen with a High Risk OB and let them know ahead of time you want to talk about cancer/ multiple myeloma / MGUS and pregnancy.

In my case the dr's could find little research, since as you know being close to 30 with multiple myeloma is quite rare, so they used the more common in our age Lymphoma / Luekemia cases to compare treatments, outcomes etc. But all the doctors gave me the go ahead to try while I was in Remission They of course recomended I be followed closely, but the overall risks were not that much greater then a normal pregnancy which carries a 3-6 % riks fo genetic or other grave risks for the baby. We did a frozen IVF fertility preservation cycle before my stem cell, since i am peri menopausal to menopausal from the chemo. You may want to speak to a fertility dr. too.

Your husband and you need to have some good conversations about all the what ifs and decide if you are both on the same page.

My husband and I would both like to have a baby (or try). We both seem to be on the same page and willing to look at the worst case scenarios, as in what if I relapse in pregnancy, what if I get very sick and can't take care of the baby (ie. we have decided not to breast feed beacuse of all the drugs I've had in my body from my treatment, and this way he can do the feedings at night because I don't function well on little sleep he will have to step up and o night feedings)

So don't give upyour dreams, you are still very young, and have your life to live!

[elizabeth104]

Re: 28 Female - Borderline MGUS/SMM

by elizabeth104 on Fri Aug 31, 2012 6:01 pm

Thanks so much for the encouragement and sharing your situation with me! I wish you good luck and I hope that your IVF is successful, you have a healthy pregnancy, and stay in remission!

My situation is a little bit different.... I am categorized as of right now as borderline MGUS/Smoldering. I am not undergoing any treatment, and hopefully won't start treatment for a while. That in itself is a whole other can of worms....... "watch and wait"....makes me nuts. We'll see what my BMB is in December. But anyway.

I just worry that pregnancy could cause the disease to progress further than where it would have been otherwise. Also, I think about the ethical implications of knowing that I have this disease (not techinically cancer...yet! but still) and bringing another person into the world. I know anyone parent can get cancer, or get hit by a bus for that matter, it's just different when you know there is a high chance you will get really sick someday. I just hate to think of putting a child through that.

I have faith that if I am meant to be a mother, I will be one someday. Whether that be by naturally having my own child or adopting. At least that is what I try to tell myself.

[Nancy Shamanna]

Re: 28 Female - Borderline MGUS/SMM

by Nancy Shamanna on Fri Aug 31, 2012 9:36 pm

Hi Anonymous and Elizabeth...wishing you both all the best with your plans about starting a family! It's a big decision to make for any couple, and of course having a diagnosis of MGUS or multiple myeloma only complicates that. I think it's great that you are doing so much research before leaping into anything....Nancy

[elizabeth104]

Re: 28 Female - Borderline MGUS/SMM

by elizabeth104 on Mon Sep 03, 2012 6:41 am

Thanks for the encouragement, Nancy!

[Nancy Shamanna]

Re: 28 Female - Borderline MGUS/SMM

by Nancy Shamanna on Mon Sep 03, 2012 12:06 pm

Hi Liz, I think that what I meant to convey somehow that it is great that you can research into the idea of starting a family. Whether or not you decided to do that would be based on many factors...medical, support of other family and more. At least in this era one can look into that! And whichever way you decided, at least you know you have got the facts available to us now about that issue.

[Anonymous]

Re: 28 Female - Borderline MGUS/SMM

by Anonymous on Mon Sep 03, 2012 10:41 pm

Hi it's me again, sorry I haven't made an official profile yet!

Anyway, thanks for the encouragement about my IVF. We may got for it this winter, after we move into your new house! There is a chance of relapse in pregnancy, you are right, but also the specialists we have spoken assured us in Myeloma pregnancy is not know to actually cause a relapse (like some other disease) so that was reassuring.

Liz (can I call you that hehe)? Some of the stuff you are saying (re: the ethics of having a baby when you know you could develop Myeloma) are some of the big "what if's" I'm talking about.ou and your husband need to go over all of this and plan what you would want to happen. In my case my husband has a very tight family, and is the oldest of 5, and I have brother and sister also so we really feel the "extended" family will be there if I can not, and also I don't want to deprive my husband of having a child to watch grow up etc. His parents are also younger so are prepared to help. We know the baby stage will be hard for us, but we also are trying to look into the future like 10 years down the road, what both of us would want for our lives. It is not easy!

I think some of this ability to think long term comes with some experience. So in My case we have some expereince that myeloma for me has responded very well to treatment, no kidney or other red flags for had to control disease, and also my specialist is very experienced with Myeloma and has not told us "not" too (ie. if pregnancy was going to cause very ill effects with my health we would not do it)

[elizabeth104]

Re: 28 Female - Borderline MGUS/SMM

by elizabeth104 on Sat Sep 08, 2012 6:42 am

Hi, anonymous! Thanks for writing back!

I had a follow up with my hem/onc this week. My PET/CT was normal (yay!). I will have a repeat bone marrow biopsy in December as well as an MRI. The results from these two tests will really determine whether or not my doctor recommends that I have children on my own or not.

If I am still MGUS he says that I can cautiously proceed...but there is still risk of progression. If it turns out to be SMM he strongly recommends that I do not get pregnant. He said he has seen how pregnancy has progressed other patients with myeloma. I was suprised that he was so definitive; I had thought he would say it was more of a gray area.

Sooo... my husband and I have three months to discuss/decide what we will do based on the results we will get. Really scary. We are going to an adoption informational session in a few weeks. My sister has also said that she would be will to be a surrogate. She already has three young children and I was so touched by her offer! However, I don't know if I would be willing to put her through that....

I did ask my doctor if he even thought I should be considering starting a family....and he did says yes...which was encouraging. Hopefully that means he doesn't think I'll be dead in like 5 years! The more I read about myeloma the more I realize how complicated this disease is. I feel like all situations are so different. I am hopeful that whether or not I am still MGUS or have progressed to SMM I will be around for many, many years to come! I am not going to let multiple myeloma stop me from living my life!

[Dr. Peter Voorhees]

Re: 28 Female - Borderline MGUS/SMM

by Dr. Peter Voorhees on Sun Sep 09, 2012 7:53 am

Dear Elizabeth104,

There is nothing grey zone about your diagnosis. You have MGUS.

The 10-15% plasma cells was probably established by what is known as the CD138 stain of the bone marrow. This test might be a somewhat better assessment of plasma cell load in the bone marrow than the % of plasma cells identified on the aspirate, but it has caused a lot of angst for patients who would otherwise be classified as MGUS. I have many patients with MGUS who have <10% plasma cells on their aspirate and 10% or slightly more by CD138 staining. These patients have a disease course of an MGUS patient -- not a smoldering myeloma patient. And, in your case, while there was a pocket of 10-15% involvement, the overall burden of plasma cells by CD138 staining was 6-8% -- that is MGUS! I would also point out that the estimation of plasma cell involvement is VERY subjective on CD138 staining. If you have a pocket of 15% involvement over here, 2% involvement over there, 7% involvement here -- the overall degree of involvement read out by the pathologist is subjective and varies from one reader to the next.

I would be very cautious about making important life decisions on 2 bone marrow biopsies. Let's say in December that your M spike is unchanged, the aspirate shows 3% plasma cells again, but the plasma cell burden by CD138 staining is read out as 10% instead of 6-8%. That is a result within the margin of error of the test -- would you really not pursue having a family based on this information?

Could pregnancy affect things? Perhaps, but there is no good data available to help quantify the degree of risk. A diagnosis of MGUS is typically not established this early in life. That is not to say that it does not occur. It is simply to say that people your age are not typically screened. I am sure there are many other patients who presented to their Rheumatologists at a similar age with similar symptoms and never were screened for MGUS. In the overall scheme of things, I would suspect your risk is lower than say someone with smoldering myeloma with 40% plasma cells in their bone marrow and a rising M spike (I don't consider the rise in your M spike as worrisome).

Lastly, realize that the therapy of myeloma is evolving quickly and people are living longer now than they did even 5 years ago. This continues to improve as new drugs become available.

We are close to December, so it is reasonable to wait and see what your repeat testing shows. But, I would look at all of the data and not zero in on any one number -- as I said above, I do not want you to make an important decision as a result of random fluctuation in a test result.

This is an individual decision and a difficult one. But, if your testing is similar in December to what you have now (recognizing and respecting the fallibility of these tests), I would be very supportive of you moving forward with your family.

Let us know how things go in December! Good luck!

Pete V.

P.S. As far as the infections are concerned, I think this would only be related to your MGUS if the levels of normal IgG, IgA, IgM antibodies are suppressed. If they are not, I suspect the infections are a result of exposure in your line of work. Kids are cootie factories!

[Dr. Peter Voorhees]

Re: 28 Female - Borderline MGUS/SMM

by Dr. Peter Voorhees on Sun Sep 09, 2012 8:00 am

P.P.S. You are being followed at a terrific Myeloma center wiith a tremendous wealth of experience. Your physician is fully aware of what I have told you and will be able to help make you an informed decision about how to proceed, especially since they have all of the data in hand to interpret. Best of luck to you!