Sunday, February 17, 2013

A Good Question - actually, two!

I should put this somewhere on a page but I'll have to think about where and best way to present.  Bottom line, a good question (thanks to Christina Yoder for asking on the MM support page on Fbook) and notes I gave to a friend (thanks to Nancy Newby for making me put this down) who's going through her RVD cycles and dealing with the issues I have dealt with.  Hopefully others will find this useful as well!  I still owe everyone an update on the SCT and what I would do different - I promise, it's coming!  And if you read on to the very bottom you get a prize!  On to the questions! 

Question A) "Hey guys, a lot of you communicate with numbers. When is the point where you can actually 'understand' what to look for?" (Christina's question)  A good question, especially for those recently diagnosed, it's overwhelming, what do they mean and what the F are all these acronyms?!?  So here is my response, I'm not a doctor, I'm a patient, going through this mess just like you.  I've tried to educate myself and this is soley my opinion on what is of most importance to monitor and why.  That said, I do maintain a list of all my results (see earlier post on tracking bloodwork).  These are my thoughts:
First, I think the disease propogates differently for everyone.  I never had a plasmacytoma/tumor.  The numbers I've watched and why:

1) protein level - low=6, high=8.3 - i was originally diagnosed after a high protein level (9.2 and  9.8) and they sent me to the Onc.  

2) the protein level is high due to the Ig numbers: IgG, IgA and IgM - each individual proteins that help protect your body from infections.  
  IgG should be between 700-1600
  IgA should be between 70-400
  IgM should be between 40-230
I was IgA and when first diagnosed I was in the 2000 range for IgA and had 20-40% plasma cell penetration in the bone marrow.  I started RVD and I was 85% plasma cell penetration and my IgA numbers were over 4400.  

3) FLC (free light chains) - These are your Kappa/Lambda numbers.
  Kappa - 3.3-19.4
  Lambda - 5.71-26.3
  Kappa/Lambda ratio - .26-1.65 - i think this may be the most important as it measures the kappa agains the lambda, to make sure you have the correct balance.  However, Lambda is a slight trigger on my version of the disease but not extremely prevalent. 

4) M-Spike - you don't want one!  Prior to my RVD my m-spike% was in the high 30's.  Not sure if I can appropriately explain m-spike but I agree with an earlier comment, it was the only tool for diagnosis originally. 

5) calcium - you don't want a high calcium number (should be between 8.5-11) as that could potentially indicate that the bone is being compromised.  If the bone marrow penetration is complete then the rogue proteins start at the bones, causing litic lesions (small hole sin the bone similar to a termite in wood).  These litic lesions then release calcium into the blood stream.  This also releases the antibodies into the bloodstream (i.e., proteins into the bloodstream) which then affect the kidneys.

6) Platelets - above 150 is your target - if below (seriously below) you will need transfusions.

7) WBC (white blood cells) - this is what helps you fight incoming diseases (colds, infections, etc.)  you want this number close to 4.5 but you'll always fluctuate between 3 and 6ish. 

8) Hemoglobin - your red cell production - you want it close to 13.9 but taking Rev inhibits the production.  Prior to my RVD I was 11.1-12.1 range.  After my chemo I was in the 13.1 to 14.6 range.

9) Neutrophils - i can't describe these but know they watch (also indicates your ability to fight off cold, cough, etc.)  if you have a cold you'll see big fluctuations here (along with monocytes, basophils, etc.) 

Question B) "Do you do a special dient, not to lose weight (which I so need to do since on steroids) but a cancer prevention diet?" (Nancy's question) Now my answer wasn't really directed to the diet but more to the drugs you're getting and how I've best been able to counteract the side affects from these drugs.
I'm on a neutropenic diet now - avoid all  potential food diseases. I can have hot dogs and American cheese but need to avoid blue cheese and thin skinned fruits, etc. but that's due to my transplant and immunity issues. 

I've not believed in the cancer diets but I've never really tried to live by it either. I've just tried to eat healthy and change when my body said change. I would eat salads for two weeks and then not have one for two months!  

But things that may be of use to you!!
- fish oil (1k) - found this very useful in keeping things regular when on the steroids. Usually took either in concert w the steroid or on the next day after steroid. 

- gas x extra strength - essential with steroid use!  Gas and bloating sucked. Search my blog for "mr michaelson" and you'll get a laugh.

- b vitamin complex (100 or 200) - useful to give you a bit of a boost. Not a caffeine type boost more mental awareness and energy. Vitamin water always helped me like that as its a big b vitamin boost. 

- gas and digestion are the most difficult. Salads may be high in fibre but really bring a lot of air into the system when you eat. Oatmeal has a lot of fibre without the air intake and can result in what you need without the sound effects ;). Think about what you're eating and try things separately so you can identify things that make you uncomfortable. 

- on the steroids - have something to do. I was fine at night if I fell asleep by 11p. But if I woke up after that I wasn't back asleep till after 3a.  Find books for your kindle. Find projects (art, music, creative projects are good for the mind!)

- velcade causes peripheral neuropathy. My blog has a bit if an explanation under velcade ( drugs and what to expect). PN can be bad - look for signs: burning sensation, itching in fingers or palms, pain in feet or heel. Want to tell the doc early. They had me on Lyrica and Nortriptylene which didn't do much to help but I couldn't do without. 

- I was (and still am) a big believer in massage and other similar therapies. I was in Asia for 3 years where massages were cheap and easy to find. The intention of a massage is not just relaxation but clearing if toxins and roadblocks within your body. If you did this once a week you found yourself feeling in "balance". Acupuncture is another opportunity - balance you chi!

- Revlimid - if you start feeling itchy or get red marks in your eye sockets don't worry, it's temporary and Benadryl or similar will relieve (and knock you out!). 

That's all I can think of for right now and I know it's a lot!  ;). Also, tell your hubby that the steroids will put you over the top (the nurse told me I will "kick the cat"). You can become a supreme bitch!  And you will have a hair line trigger. You won't mean it but make sure he's aware!  ;)

And now for the prize!  Here I am, 20 days after the Melphalan, photo compliments of the Pano iPhone app which is usually used for panoramic shots but this is still a cool effect! :)  I had my wife shave my head yesterday as the small spikes were killing me whenever I moved around on my pillow.  So here's the pic!  


Elizabeth Sedway said...

Thanks for discussing these numbers, Bill. This helped me.

rugbyhubby said...

Great! The numbers was in response to a post on the fbook mm support page. As i was typing I realized it would be important to post these here as well. thanks for reading!