Sunday, August 16, 2009

Gonna Do This in Parts One and Two

Hey All....
I have so very much to tell you that I know I'll run out of steam before I finish, so this entry will be in 2 parts. Part 1 and Part 2. Today is part One. My last "real" entry was written on Monday August 3rd, except for my little blurb yesterday, on 8/15. So as I left off in my previous entry, I told you we had decided to once again do my "self experimentation" of taking the Revlamid with the IV chemo Velcade to see if I was again going to develop a fever (ie raised temp as MM world says a REAL fever is 100.5.) So......place your bets now, before time runs out! Well, gee whiz, guess what? I take the Rev on Sat. nite and I start a fever of 100.6 on Sunday. I take it again Sunday nite and ....boom....again run the same temp on Monday. So I issued my own cease and desist order and stopped taking the rev.....so again, gee whiz, no temp on Tues. Wed or the rest of the week for that matter. So it still looks like it's an issue of taking the Rev daily while still having the Velcade in my body. Those 2 together, IN ME, are just not cooperating, which as I've said before, really just blows me away for a number of reasons. Firstly, I have never had a drug reaction ever to anything, and secondly, from all the research I have done, the 3 drugs I am on show the most promise for a complete remission, so the frustration is at crazy levels for me, seeming not to have the ability to take them both. Which then brings me to my visit with Dr. Ben who is an MM specialist at Moffitt Cancer Hospital in Tampa, where I had my bone marrow transplant. Dr. Nair wanted me to see Dr. Ben for a consult on my current status as well as getting his input into what we are doing now (which obviously isn't working) and perhaps he could develop a protocol that would work.
So Mom and I left early Wed morning and made the 2 hour drive to Tampa for my appt. I also brought the results of my last bone body scan and the results of my bone marrow biopsy that showed that I have 55% multiple myeloma cells in my bone marrow. (very very sucky, by the way) :(
To make the meeting with Dr. Ben short and sweet.....he reviewed all of my blood work, results etc and we went over what chemos I am taking and when and how much. I told him about researching that the current chemos I am on seemed to be what was working the best for most people, and he agreed, saying I was on the right meds. I also told him about running a temp and the other issues I was having. He excused himself to "look up some things", and was gone quite a while several times over our visit (Mom swore he was seeing other patients...LOL), but the last time came into the room saying "I think I have figured out the problem". AHHHHHHHH..music to my ears. He said he felt I was getting too much of some and not enough of some but mostly the SCHEDULE I was taking them on needed to be changed. Again, music to my ears. He gave me a sheet of how all my chemos were to be taken and......lordy, lordy......it would be difficult for a rocket scientist to figure out! There is no way I can keep this schedule in my poor little chemo brain, so the day after we got home I sat at the computer and got it all down on paper so it made some sort of sense. Just for instance, to give you an example, the IV chemo is to be given on Days 1, 4, 8 and 11 on a 21 day cycle. (and given in a 3-5 second IV, to be immediately followed by a flush) and then the Revlamid is to be taken days 1 thru 14 every 21 days and the Dex is to be taken on Days 1,2,4,5,8,9,11 and 12 every 21 days. Now this is only for the first 4 cycles and then there are some changes for cycles 5-8, and then a completely different way once I reach maintenance, hopefully on cycle 9. I am so visualizing and praying I get to cycle 9 with no issues. Wouldn't that be wonderful?? This is a complete departure from the way I was getting my chemo, so I see Dr. Nair this upcoming Thurs and will review what was done at my visit with Dr. Ben. I can't imagine that he would make any changes to this new schedule as that is why he sent me to Dr. Ben and Moffitt in the 1st place, to see what changes needed to be made. SO if all remains well, I will be starting the new chemo regime a week from tomorrow (on Monday the 24th). If you're wondering why I didn't discuss this with him on the Thurs I got back, is that Dr. Nair is on vacation for 10 days, so the next time I see him will be this upcoming Thurs. What I haven't mentioned thus far is that even though I ran the temps on Sunday and Monday, I didn't feel good AT ALL on Wed, or Thurs or Fri. either, so I went in to have my bloodwork, CBC, done on Friday and found out WHY I had been feeling so shitty. My RBC were so low, not even a shot of procrit would work (what I usually receive when reds are low, but not dastardly so). My levels were so low that I was being so severely anemic, that I would require a blood transfusion AGAIN....just had one in JULY.....AAAAARRRRRGHHHHHHHH! But it makes sense, with my symptoms of extreme fatigue(blood not carrying oxygen throughout my body), off balance, easily out of breath, etc etc.
Oh yeah, one more thing.....my WBC, for which I was giving myself shots in the belly of neupogen, were at a normal range, so I will continue to hold them until we see the need to resume the shots. So now that I'm leaving you with "having to have a blood transfusion".....I will resume with Part 2 tomorrow.

67 comments:

Susan said...

stay strong and hang in there dearie!!!

Jerry said...

Did Dr. Ben share with you why this schedule will not cause a fever and why the other schedule caused a fever? What is the doseage level of both schedules?

I hope you do well with this treatment plan. Sorry you have been having a rough time with the Velcade and Rev.

colleen said...

omg...what a schedule. How are you feeling?? I hope you are doing better with the new treatment.. much love and prayers...

Kim, denese and kd dog said...

Jan,
Sounds familiar to us. Kim is on Velcade every month on days 1,4,15 & 18. On those days he takes Dex and Levaquin. He takes Thalidomide 'every day". He does Thaildomide instead of Revlamid, but will probably have to change over before long due to neuropathy. He gets tired on the Velcade days, but no fever and not sick. Perhaps your "new" schedule and dosage will work better. For Kim they do his Velcade dosage formula depending on his body weight and height (THAT DAY) so maybe cuz you are so little, it was affecting you more. Hopefully, now they are cutting it back and pairing it with Dex your fevers will not be a problem. We are thinking about you lots and praying daily for a re remission!

Roobeedoo said...

Jan - you have gone quiet so suddenly. I do hope you are doing OK.
Wishing you all the best.

Sue said...

Hi Jan,

I have followed your blog.

Hope things are ok with you?

best wishes
Sue

Sandy said...

Jan - we are out here thinking and praying for you since there has been no posting for awhile. Just wanted you to know this....

colleen said...

Dear Jan, Im thinking and praying for you daily. I love you!

colleen said...

Dear jan. I want you to know know that Im thinking of you. I pray for you that your pain will go away and you can enjoy life and your family. You are enduring so much and im so very sorry that you are having such a rough times. I would give you the moom and stars if I only could. You are so very dear to me. I hope yo're feeling better soon. love you

colleen said...

Hi jan...just read your facebook page...Yeh!!! So happy you are feeling better...FYI...I will put on my glasses B/F i write..
Im glad you are regaining your strength. Hang in there girlfriend. love you

Susie Hemingway said...

Do hope you are going along Ok Jan, not seeing any posts from you here? still I was pleased to read from one of the comments listed here, you are facebooking. So keep strong and well. Every best wish from us here in the UK

shaz said...

Hi Jan hope you are feeling better.
I miss reading your blog
Love from Sharon in Australia

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tim's wife said...

I just read that Jan has passed on. I had started following her blog shortly before she stopped writing and had so hoped she had
not gotten real ill but just gone to facebook. If her girls are monitoring this at all,
I just wanted to say that I am so sorry. Just reading your Mom's blog, I could tell she was a real
nice gal. Sending wishes of peace and healing to you.

Anonymous said...

I just read that Jan has passed on. The blog says a lot about her great character. May her soul rest in peace.

Sandy said...

Condolences to Jan's family - and yes, this blog really did show what a fighter she was and what a lively sense of humor she displayed in spite of it all. It is sad to lose a loved one under any circumstances.

colleen said...

Jan's service was beautiful..just as she was. Her girls both spoke about her laughter..we all know that laugh. her strength and her sense of humour. Her family all spoke of what a inspiration and spiritual person she was..even laughing a few weeks ago watching "Hangover" Thats so Jan!! She was such an amazing lady..I only wish I had the gift of gab and the wonderful way she could put her personality on the page. When I read her blogs or writings it was just her shining through and through. I would laugh and cry with her daily. Im so blessed to have such a wonderful woman as my friend. God gave such a beautiful gift and I will treasure it unitll we meet again. Jan I love you so very much and will miss you. I know you will be watching down on us...and probably be the lead ANGEL.♥♥♥♥peace and healing to all your family

Brother Ted said...

Dear Jan, May you rest in peace. May your family find solace in the strength that you showed in every one of you blog entries.

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I just stumbled on this blog today. When the last entry was from August, I felt a little anxious. I was hoping for the best but found that Jan had passed. From reading her Blog, she fought a good fight. I too have MM but am fortunate to be doing well at this time. My belated condolences and best wishes to Jan's friends and family.

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