Cindy’s Multiple Myeloma Blog

Yesterday I had my first appointment with Dr. Deauna (Dr. D.).  She’s a middle-aged Philippine doctor, extremely busy but seems very intelligent.  She specializes in Multiple Myeloma and Lymphoma which is good.  I met her nurse assistant, “Cindy” and she seems very good and personable.  I was a tad bit intimidated with Dr. D., but that is typcial for me.  I’m easily intimidated, especially with forceful women.  I’m hoping that I get used to her and will be able to speak my mind more firmly as I get to know Dr. D. better.  Dr. D. appears to be very focused and on her own agenda.  I’m not sure if she’s very open-minded, but I can’t be for sure yet until I spend more time with her.  A part of me was impressed and liked her yet I don’t like that she intimidates me.

Anyway, Dr. D. does not want me taking the Curcumin at all.  Let me first explain my current health stats and then get to the Curcumin.

She started the meeting out by asking me lots of questions and decided that I have Stage III neuropathy.  That is from the medications, most likely Revlimid.  The Dex did its damage, too, but its affects are probably more reversible.  Not so sure about the Revlimid’s affects, though.  I’m afraid some damage could be permanetn.  She said it could take up to a year for me to feel better even. Her goal is to make me feel better from the neuropathy.   She prescribed Neurontin for the neuropathy and I’ll be doing some physical therapy in the near future. 

 There’s good news about the cancer in that as of right now, my cancer is really low and doesn’t need treatment.  She told me to stop worrying about the IGG serum numbers but to focus on the M-spike.  My M-spike is 0.69, or at least as of 12/12/07.  It will be interesting to see if it increases at all by my next appointment with Dr. Deauna which is 2/21/08. 

She ordered an Echo cardiogram and a Mastatic Bone Survey.  I’m not sure why she ordered the Echo.  I thought she acted a little funny while listening to my heart, but you know how that goes.  We all think the doctor sees something and is not telling us.  But why would she order one of these?  I should have asked why.  I had those two things done today.  I won’t know the results until I see Dr. D. next - 2/21.

When I got home today I had a voicemail from Cindy.  She said they’d received my blood test back, that my “iron was low” and they have me scheduled for a colonoscopy at 8:00am on 1/30/08.  What the heck?  What’s that got to do with the price of tea in  China?  Cindy used some other word for ‘iron’ at first, or so I thought.  I couldn’t understand totally.  Cindy is also some other nationality and has a slight accent.  It was too late to call Cindy back to confirm the appointment but I do not know WHY I would need a colonoscopy. 

 So, here I am with a rare blood cancer and I’m having an Echo and a colonoscopy.  OK, whatever the doctor says I guess.  Hmmmmm. 

I do have an appointment on 2/13 which is my 2-hour IV treatment of Aredia.  It’s for my bones - protection and pain.  I’ll have to do a 24-hour urine collection on 2/12 and bring it in (fun) plus have CBC (complete blood count) done before I get the Aredia.  So, when I see Dr. D. on 2/21 it should be very informative.  Colonoscopy.  Echo.  CBC.  ummmmm…

I checked out a few books on Myeloma from their Educational room and I also talked to this really intriguing lady who worked in that area.  After spending some time with her, I know why she works in the Educational area.  She was like the professor type.  She sat me down on a computer and showed me some pictures of antibodies and cells  and explained to me how myeloma occurs. 

In your marrow your blood cells are formed.  Red cells, white cells, and other cells.  There’s T-cells and B-cells.  I forget what the B-cells have to do with it, but in the T-cells - that’s where the bad myeloma cells start arriving….I think.  She showed me pictures of these antibodies that are formed. They look like little “Y’s”.  On the top of the ‘Y’ the outside of it is the “Heavy Chain” and the inside of it is the “Light Chain”.  Now, Myeloma has many variations and all I know is that in my case I produce too many Light Chains.  Oh..I know I know… when you have some bacteria or whatever, these antibodies are formed to go kill it.  They just do their job and they disappear.  They’re gone after they do their job of killing the …bacteria I guess it is.  But in myeloma, it’s giving out false messages I guess and lots of these antibodies are produced but they never die.  They just keep multiplying and that’s where one gets too much protein in their blood & urine.  I know a lady who found out she had myeloma because her eye doctor noticed too much protein in her eyes!!  I have no idea how he noticed that. 

I’m not fully with it here (above paragraph) but thought I’d give it a practice try to see how much I retained.  See, this Myeloma is complicated.  I hate it.  I wish I had another type of cancer.  As the young kids say, “this type of cancer sucks.”  :) 

I am going to try very hard to understand it more technically.  I have to.   

My dilema is about the Curcumin.  I was considering on continunig taking it and just not telling her.  I don’t feel comfortable in bucking her right now.  She doesn’t seem like the type that would handle it very well.  I think she would give me an ultimatum about treating me.  Why am I such a chicken? 

I’ve been thinking about this, though, and here’s where I’m at about it.  I will stop the Curcumin for now.  Dr. D. said my numbers are low enough that I don’t need treatment.  Her opinion was that “let’s first fix me now” with the neuropathy and not put anything else in my body.  OK, that is a thought.  But she doesn’t know anything about the Curcumin!!  That is a concern for me because the IMF (International Myeloma Foundation) has even had articles about Curcumin being tested for cancer, particularly Myeloma.  WHY hasn’t she heard of this?  She’s very traditional and if there’s not been scientific evidence with it, she’s not interested. 

Well, we see you can’t believe everything you hear anyway–especially with the recent stuff in the news about Vytorin.  Is that a fair hit?  I think so.

But here is the deal. I need to do my homework.  I did have some articles about Curcumin, but not organized and I couldn’t defend it very well.  I haven’t researched it all that well to be quite honest.  I’m going by Curcumin was first recommended to me by a guy who lost his wife to cancer, but they found out about Curcumin too late.  She had a very advanced cancer, came upon her fast and she died within 30 days of diagnosis, so it may not have helped her anyway.  But that is when I first heard about it.  Then I’ve read on Blogs from other individuals with Myeloma who’ve tried it and unlike me, they have done their research and they know about it and can carry on a somewhat intelligent conversation defending it.  I can’t - but I’m the leach riding on their backs - relying on their smarts.  OK, sarcasm aside, I am going by the opinions of very reputable people - or so I think.  To be fair, I have done some research on it, I just can’t relay it.  Besides, it’s enough for me to just know that a spice called Curcumin is being tested and that there are several individuals who’ve had positive results and they appear to be from the Curcumin.  I know the MD Anderson institute have done studies on it.  I told Dr. D. that  and she said that they do alot of independent studies.  I forget why she said that wasn’t good enough.  

So…perhaps I should give Dr. D. a chance and let her focus on trying to heal me from the affects of the medications.  She said that my current symptoms are from the medication and not the cancer.   Stage III neuropathy.  What is that? I didn’t ask.  What is wrong with me?  I just get overwhelmed and intimated I guess and lose my opportunities to ASK QUESTIONS.  But I have a few now and will write them down for 2/21/08. I’m just not good in certain situations and atmospheres when the doctor is saying all this stuff and ordering this and that and I don’t even realize I have a question until it’s all over, especially when I first meet a doctor and one I felt a bit intimated with.  

This is cruddy stuff sometimes.  This is when a husband or a devoted daughter would do.  Poor me.  Poor poor me.  Ha ha ha! That is what it sounds like.  Forget it!  It’s NOT really poor me.  I have lots of support and just need to ask for it.  But still, I want to be a brat and wish I had a husband to do it all OR a devoted daughter to do it all for me.  Maybe not do it all, but to bounce things off one another.  I want to be lazy.  I don’t want to have to take charge of my life. 

But I must. 

P.S. I did not make it to the RawKC meeting last night. I thought it would be pushing it.  I’m glad I canceled and I will plan on attending later when the weather breaks or at least when I don’t have a doctor appointment.

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