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Shoopy
Posts: 210
Joined: Jul 2013
It's sort of a "mixed bag". On Monday I had the bone marrow harvest where they drill into the hip bone to suck out the stem cells. Yes...it hurt! The good news is that we now have enough stem cells to proceed for the transplant. The last hurdle was the CT and PET scans which I had yesterday and today. I met with my oncologist shortly after noon and we have decided to postpone the transplant again for 2 months. He said there are two small lesions (one near the liver and one behind the stomach) that have shown an increase in activity. It's a very minor increase in activity however transplants work best when the cancer is either non-existent or declining in activity. He said we could proceed with the transplant but past experience shows there's a 70% chance of the cancer returning within 3 months.
 
The plan is for me to start taking a drug called "Revlimid". It is not chemo. It is a pill--so no hospital stays! It has proven to be effective against the genetic markers of my specific cancer. It does three things: fights the cancer itself, reduces the blood supply to the cancer, encourages my body to fight the cancer. It is less toxic than chemo so some of my restrictions have been/will be lifted (ie: travel). He said I might even feel generally better.
 
I'll take this drug for the next 8 weeks and then we will do the PET scan again. If it's clear...they will move me into the transplant. So while it wasn't what we hoped to hear today...we are very very close to becoming ready for transplant. This is the last hurdle.
Merry Christmas everyone!
Karl
 
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1190
Joined: May 2012

Shoopy,

Sorry about the delay. I know this is turning into a real marathon for you.  I have not heard of your drug, but bless it, and may it get you to the SCT soon. Christmas blessings as well,

max

Rocquie's picture
Rocquie
Posts: 515
Joined: Mar 2013

Karl, congratulations on having the drilling over and enough stem cells collected for your transplant. Too bad your procedure has been delayed but we certainly don't want a relapse within 3 months! That would be awful.

Sometimes my husband calls me Ziggy because I'm always looking for the bright spot, but at least you can be home for Christmas. And maybe your magic pills will have you feeling well enough to enjoy it. Smile

I am so thankful for your Doctors and their determination to kick your lymphoma once and for all. And you do have the type that is curable. And you do plan to live forever.

Merry Christmas to you and your family,

Rocquie

 

jimwins's picture
jimwins
Posts: 2072
Joined: Aug 2011

I'm sorry for the delay, Karl but sometimes things happen for a reason and I'm optimistic still.

Hang in there buddy!

Hugs -Jim

DadysGirl
Posts: 322
Joined: Aug 2011

Hi Karl! I've been following your posts all along and wishing you will be cured at the end after all the difficulties and delays you've been experiencing. Keep positive and I hope you will have clean results after 8 weeks with the help of the new pill.

allmost60's picture
allmost60
Posts: 3173
Joined: Jul 2010

Hi Karl,

I know 8 weeks sounds like a long time, but it will go by faster than you think. I hope the Revlimid gets you where you need to be for the transplant. I shuddered when you said they drilled in your hip and it was painful. I remember all too well how painful my BMB was and swore I will never have another one done unless I'm sedated....like in "knocked out" sedated Surprised I'm so glad they were able to harvest enough cells.."yea"! You take it easy now and just relax and enjoy the holidays. Thanks for letting us know...I was wondering how things were progressing with you. You have a very Merry Christmas Karl.Smile

Best wishes...Sue  (FNHL-stg3-grd2-typA) 

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Karl,

I haven't been on for a while so I don't really know all the details to your situation but I will be keeping you in my prayers! Hope you had a Merry Christmas and may your New Year be a better one!!! Hang in there (((Hugs)))

Sincerely,

Liz

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Karl,

Whew....you have had some setbacks, but think positive and that it's all for the best...Waiting must be hard, but hopefully you can find something to do to entertain you. You have been hanging on and seem to be taking every twist and turn in stride. I personally don't know what it is like to be drilled into, but I can only assume that it isn't something that one cares to repeat...lol..I would however go through everything that I have endured again if it was possible to make sure that none of my family and friends would have to deal with what I have. I haven't been on too much recently, but I try to keep updated on people and their treatments.

Keep In touch

XXXOOO

Carie

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