6/7 – Numbers and Support Groups

I don’t know if I posted my monthly Myeloma Markers on here from last week but they pretty much stayed where they were.

M Spike is now ZERO for the second straight month indicating no Myeloma in the blood or the urine. This is GREAT news just as it was last month. The one glitch in the numbers is that while my Kappa protein is normal level and my Lambda protein is normal level – the RATIO between the two (they call this the kappa/lambda ratio) is ABOVE NORMAL LEVEL. From what I understand, this indicates there is active Myeloma in my body. These are called “light chain” proteins.

I asked Dr. J about this and his email back to me was this:

1) Great News
2) Ratio not important; light chain values great

OK – so all is well, right? MAYBE? Read on …

Here is why I DON’T like support groups:

When I was about two cycles into this in I was featured on a great website called MM For Dummies:

CLICK HERE FOR #BRADSTRONG ON MM FOR DUMMIES

I met a guy through the comment section named Stan. Stan is also a patient of Dr. J and we met in person at Mt. Sinai and discussed our treatments, our fears and our lives. Stan and I have developed a pretty neat friendship. Stan and I also managed to get added to a Facebook support group as well.

In this support group Stan recently posted that he achieved an SCR. (Stringent Complete Remission) and I was quite excited by this. I commented – “great job” and gave him an update on me – Zero M Spike 2 consecutive months, normal light chains but ratio high, etc.

We got into a conversation about the meaning and I said Dr. J says not to worry – all is well.

At this point one of the self appointed amateur doctors that you find in EVERY support group decides that he is going to play oncologist and tell me how IMPORTANT the kappa/lambda ratio is and that is what is looked at in Myeloma – blah, blah, blah.

Now I am freaking out. This guy has a pretty widely read blog in the MM community. He seems to know what he is talking about. I have read his blog and he has done his homework. I emailed Dr. J:

Dr. J

Everything I have read says that ratio is very important. It jumped quite a bit. Not in normal range. Is this an indication of a possible relapse? I know Kappa is normal but it is as high as it was in February. Does the high ratio mean Myeloma is more active than before?

His response:

No! Not to worry! (again with the exclamation points – his, not mine)

SO – What am I getting at here? The reason I don’t attend support groups is that you can’t control the environment. Too often they become bitchy chat rooms full of know-it-alls and negativity coordinators. I choose to spend my time with supporters who are positive and happy. People that have chosen to confront their disease and live their lives as if …as if they will live for a long time. Even if a long time is a week, a month or a year. People who choose to MAKE THE MOST of it all.

The SILVER LINING here is that environment exists for me. It exists with family, friends, co-workers and clients. It exists on Twitter. It even exists in that very Facebook group. There are plenty of positive people in that group that share positive stories, that inspire others and are legitimately looking to be lifted up. To ALL of you – I support you. To the OTHERS – leave us alone!

Oh … and to the amateur oncologists out there: Shut the fuck up … please … for all of our sake.

I am off to Hackensack to see the transplant doctor this morning. Feeling great. Feeling #bradstrong. it is ANOTHER great day to fight Cancer!

4 responses to “6/7 – Numbers and Support Groups

  1. Thanks Brad… I attended one support group two months ago and said almost the same words….”Oh … and to the amateur oncologists out there: Shut the fuck up … please … for all of our sake.”
    I’ll stick to fundraising for our hospital in Toronto.
    The Princess Margaret Hospital.- http://www.mm5kwalk.ca/home.aspx
    George

  2. Brad, I found your website by accident.

    My husband has MM and his local (Maine) and Dana Farber oncologist/hematolgist (renown MM expert) have also told us the ratio doesn’t matter. I also run a MM support group in Portland, Maine. We have 4 specific rules for the group and it’s worked out so well. One is we don’t give opinions, don’t vent and respect others (I’m paraphrasing). When we have an “outburst” by a blowhard, my co-facilitator and I calmly restate the rule, although we haven’t had to do this in a long time. As a former New Yorker, its probably harder to enforce in the NY, NJ area than here in Maine, since, if I can generalize, people are more boisterous there. You may want to suggest it.

    I enjoy reading your website very much.

    Wendy

  3. Wendy

    I don’t normally respond to the comments on this page because I know I can’t respond to everyone and I never want anyone to feel as if another comment is more important than their own. That being said – I am compelled to respond to yours. THANK YOU for running your support group. I am sure that many people get great value out of what you are doing and that you have enhanced the lives of many in your MM community. Please don’t feel as if I think support groups are bad. I just was expressing my personal experience. Doctors have years of medical study and training. Mine are the very best the profession has to offer as are yours at Dana Farber and the like. That is why we put our trust in them! I am sending a resounding FU to all of those who feel they can espouse their amateur medical opinions to those that are so dependent on information. These folks are doing a disservice and running interference against the great things you are doing.

    All my best,
    Brad

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s