Wednesday, December 19, 2012

Mayo Consult, ID Specialist, and 6 more weeks...

I went into my appointment yesterday very optimistic. Unfortunately, Dr. R did not tell me what I wanted to hear in terms of pregnancy. That being said, this blog post has been written and revised and written and revised several times. I hope that it does not come off as negative, whiney, or melodramatic. :)

So. I met with Dr. R to review my results yesterday afternoon. Afternoon is a relative term. My appointment was scheduled for 4:45 and I didn't actually see him until 7:00! Whoa. What's up, triple bookings? However, over the last 3 years having appointments with Dr. R, this is something I have grown accustomed to. Annoying, but always worth the wait. Good thing I brought papers to correct, snacks, AND my husband, mom, and sister. Definitely helped pass the time. :)

At the beginning of the appointment, I shared with Dr. R the leg pain that I have been experiencing since my biopsy in July. He confirmed that a nerve must have been damaged but eventually it should heal. I also shared, yet again, that I experience frequent night sweats and fevers.

The discussion continued on to review the results of my MRI, blood work, and biopsy.

MRI is negative. Great.

M-spike is .42 up a little bit from September when it was .39. Still very low, but consistently moving upward over the last 3 years. Not so great.

Free light chain levels are abnormally low, but the ratio is normal. Great.

Blood work is all within normal range. 24 hour urine has no monoclonal protein. Great, great.

Biopsy results continue to be concerning. The full results can be viewed here: Biopsy Results - December. Not great.

Just to review: in July my biopsy showed 10-15% plasma cells (6-8% in the intertrabecular space). My biopsy from last week showed 10% plasma cells (5% in the intertrabecular space).

Good news: 10% = lower than my July biopsy
Not so good news: 10% = still technically meets the criteria for smoldering myeloma, not MGUS

My aspirate in July was 3% including atypical forms. My aspirate last week was 1% with rare binucleated forms.

Good news: 1% = lower than my July aspirate
Not so good news: rare binucleated forms = bad plasma cells

In reviewing my biopsy reports and seeing....



....all I have to say is that the pathologists need to simmer down. Chill out with the caps lock. We get it.

Anyway, Dr. R was very reassuring that the majority of these results are very good, particularly the negative MRI, low m-spike, FLC ratio is normal,  PET/CT from August was negative, and  most all other blood work is in the normal range. The majority of my prognostic indicators are considered low-risk.

The main areas of concern are that the plasma cells are in rare binucleated forms and that the 10% plasma cells in the biopsy technically classifies me as smoldering myeloma not MGUS.  I asked him, "So am I MGUS or smoldering?" He of course said something along the lines of... "Well you have a plasma cell dyscrasia and everything points to MGUS except for the biopsy."


My real issue (heh, who knows what my real issue is, if you know me, you know I have many :)) is around family planning. Dr. R described my situation being similar to a woman who was in the early stages of breast cancer. Doctors would advise a woman with that diagnosis NOT to become pregnant due to the fact that pregnancy would progress the cancer.

Similarly, myeloma cells have estrogen receptors and there is risk that the same thing could happen - the pregnancy hormones would be feeding the cells and causing the myeloma to progress. Some of the very drugs that TREAT myeloma (Revlimid, Thalomide) are absolutely detrimental to babies growth. These drugs are forbidden during pregnancy. Dr. R said that he has had two female patients who presented with myeloma at the end stages of their pregnancies. Obviously, there is no way to know what their MGUS or SMM numbers were before their pregnancies. This is a little repetitive since I wrote a post regarding Pregnancy & Myeloma but this is where I'm at. The problem is my plasma cells are not below 10% and really he originally thought that I would be below 5% which would give me the green light. No such luck. He said that we might need to be "creative" in terms of having a family - basically our best options would be surrogacy or adoption.

We talked a little bit about the NCI and how I spoke with Dr. MR regarding the Natural History Study of MGUS & SMM and said that he said they have a very different philosophy from Dana-Farber. Dr. R agreed and said that the doctors at the NCI tend to be a lot more aggressive in their treatment of myeloma. He also mentioned that if/when I go there for the The Natural History Study they might even recommend CRD (carfilzomib, revlimid, dexamethasone) for smoldering myeloma. Dr. R said that Dana-Farber tends to be more conservative and first and foremost their philosophy as doctors is to, "Do no harm." I am hoping to hold off treatment for as long as possible so I think at this time I would definitely agree with this, "First, do no harm." philosophy.

Dr. R is going to consult with Dr. RK and Dr. MG at the Mayo Clinic regarding my profile. He said that he would call me sometime before Christmas and let me know what the doctors at Mayo said. Merry Christmas to me! He also said that I should go back to see him in 6 weeks to review this information face to face and to check my blood levels again. In addition, he recommended I see an infectious disease specialist prior to my appointment to rule out anything else that might be causing my fevers and night sweats.

All of these results are really good news and overall I am doing very well within the context of this disease. I keep trying to tell myself that.

This is good news. This is good news. This is good news.

As heartbroken as I am regarding the implications for me in terms of pregnancy, the good news is what I am trying to focus on. Dr. R said that in 10 or so years if/when I progress to symptomatic multiple myeloma there will be so many more treatment options than what there are now. There will also be so many more published research studies than there are now. Doctors are definitely headed toward what he called a "functional cure." Great news. But, at this time however, if I were to become pregnant and the myeloma were to become active he said, "We could buy you maybe 10-15 years, but not 40. Right now myeloma is not curable." 

Ugh. A lot to think about over the next 6 weeks. My mom, sister, husband, and I discussed everything over beers and french fries after the appointment. Very bad for my Permanent Health Kick, but very much needed.


I must mention, really, the BEST news I got yesterday is: I DO NOT have to do a 24 hour urine collection prior to my next appointment! Fabulous.


  1. Hi Elizabeth,
    Your Dr. appears to be on the ball about your care. His consulting with the guys at Mayo shows that he plans to give you the best care based upon the current research in Myeloma. It is good you are going to be regularly tested every 6 weeks and monitored by him. I believe from reading your tests and what I know as a layman they will start giving you Zometa infusions Zoldronic Acid 2-4 mg every 3 months. That should help with Oestoclasts and any bone density decrease you may have. Remember , we have to keep a positive attitude and place our faith in science and their research to help us!
    Have a Happy Holiday and New Year!

    1. Hi Keith, I haven't had a bone density scan so I'm not sure about the Zometa infusions. In September my doctor did mention starting bone strengthening infusions depending on how this biopsy turned out so you might be right. Thank you for your encouraging words! I wish you a Merry Christmas and Happy New Year as well!

  2. Hi Elizabeth,
    At the Dana Farber Patient Symposium last week, Dr. Richardson acknowledged that with the advent of novel agents, there may be a role for treating Smoldering Multiple Myeloma before it progresses to full-blown MM. This is in line with his perspective of "getting the snake in the basket" early and keeping it there. In your case, you have barely crossed the threshold from MGUS to SMM, if at all, so you may have plenty of time before considering treatment. That's great that he is consulting with the Mayo docs to come up with a personalized approach for you. Merry Christmas!

    1. Hi Bill, I am also hoping that I have plenty of time before considering treatment options. My concerns are two-fold - if I were to start treatment early for SMM most likely I would need to be on these new novel agents the rest of my life (I'm 29 so hopefully that would be a long time) and the long-term effects have not been thoroughly studied. Waiting for CRAB symptoms is also concerning because I wouldn't want to wait until serious damage has been done to my body. It’s a pretty fine line to walk. Thanks for the information and as always your very informative blog! :) Merry Christmas!

  3. Liz, I'm so sorry to hear of the progression of your disease, but i would like to compliment you on your amazing attitude! I honestly have a good feeling about you and your husband having a baby - i think your positive attitude can allow you to achieve almost anything:)

    How much do you know about blood results and Myeloma? I have been pretty sick over the last couple of year with Night sweats, fatigue, chronic elevated temp and leg pain (not to mention a few others). I'm under investigation for an autoimmune disease, however lymphoma or myeloma are also suspicions. The reason myeloma is a suspicion is that my kappa light chain levels have been chronically low, IgD levels high and neutrophils low. Any idea if these results really hold any significance?

    All the best and happy new year xxx

    1. Ooops, failed to mention my name is stef:)

    2. Hi Stef! Thanks so much for your encouraging words. I’m sorry to hear all that you are going through; I hope you find some answers soon. My situation sounds similar to yours - I was experiencing fevers and joint pain as well 3 years ago before my diagnosis. I was referred to a rheumatologist who ran the SPEP and found my m-spike. I was then referred to a hematologist/oncologist who diagnosed me with MGUS. Have you had a SPEP or a bone marrow biopsy? All the best to you as well!

  4. Hey Liz,

    Sorry! I was never notified to your reply:o

    As far as I'm aware, I don't actually have an M spike. I just received my follow up results and this time lambda levels were elevated, while the kappa/lambda ratio was low (am yet to discuss with my dr however - she wants me to have a bone marrow biopsy). I'm a tad confused by this whole situation. I'm under a rheumatologist due to low complement levels, but I can't help but think he could be looking in the wrong area for answers. How do you cope with the leg pain? On average days I'm fine, however I've been having more and more days lately where I just can't actually bear living with myself! I'm taking pethidine, codeine, paracetamol and naproxen.

    I need to read your updated blog and catch up, but how are things with you at the moment? How are you feeling?

    Much love from across the globe:)

    Stef xox

    1. Hi Stef,

      Hope you are doing okay, hang in there! My leg pain is due to nerve damage from my first biopsy in July. It's basically sciatica, cramping down the back of my left leg. I have a good friend who is physical therapist and she gave me exercises that I think have helped tremendously. Bone marrow biopsies are not fun but it would definitely be a good idea to see what is there! Keep me updated!

      Take care,