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dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Well I had the pet scan and got the results this morning. It's not all gone, it is better dropped to about a 4 suv and when we started it was 8. I am pretty disappointed, but my onc thinks they'll still go through with the transplant as scheduled. He says that they do chemo first to make sure it's going to respond to chemo and it is.. So I wait until thursday to make sure it's not in my marrow. He said they might want to do another round, but I can't help thinking that would be a waste. I thought the high dose chemo would kill any remaining cancer.

He said he was happy with how I am doing. My counts look pretty good, still down somewhat but not too bad. Now I just need to wrap my mind around that I am still not in remission, but getting closer. Damn I just really wish it would have worked completely.

I'll let you know more when I do. It's just frustrating.

Thanks for all the thoughts and prayers guys, I just feel so "in limbo" and I know you guys understand.

Take care,
Beth

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Beth,

So sorry to read about you results. Hang in there. The news still sounds very positive. Your onc feels your doing well and still plans on the transplant. Thats all very good news. I sure hope your not to wiped out tonight. Stay well and warm..

Lisha

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Beth,
I know exactly how you feel. When I was told I was "stable" instead of "in remission", my heart just ached. I soooo wanted to hear the word remission. Your doctor is happy and if he said they could probably go ahead and do the SCT without more chemo, then I bet you will reach remission afterwards and stay there for years to come. I've read that after the transplants the remission can last for many, many years. This is tough on you right now, but I have great hopes that your future is going to be much brighter after the SCT. I'm alwaya here for you Beth...Love...Sue (FNHL-2-3a-6/10)

CountryGal7557
Posts: 164
Joined: Feb 2011

8cm to 4cm is still awesome! we were all praying and hoping for a zero, but you're still doing good! I hope you enjoyed your gardening tonight!
Hugs!
Janelle

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Thanks Janelle. It's SUV 8 down to 4, not cm. Still improving though

CountryGal7557
Posts: 164
Joined: Feb 2011

my bad...I re-read your post and see that now.

just curious, will you get a second opinion about doing the transplant if your Oncologist "thinks" you'll still go ahead? does s/he have concerns about moving forward?

Hugs
Janelle

miss maggie
Posts: 929
Joined: Mar 2010

Dear Beth,

I am sorry the news was not quite what you expected. At least your SUV went down
4 points. Also, good news your doctor was pleased.

Beth, forgive me for not knowing. What is SUV??? What is the difference between CM
and SUV?

Lots of hope and prayers your way. Love Maggie

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi
I am so sorry the news is not what you expected but onc's are pretty darn honest and if he said he was happy with how you are doing you have to hang on to those words. He is not lying to you. I know it is so hard to not hear complete remission but if he has plans to go ahead with the procedure after the bone marrow is checked he eels very confident that you will be o.k. I am thinging about you and am sending a big hug and lots of prays. Hang in there Joanie

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

My onc was giving his opinion and you're right I do trust him, but he readily admits that everything will be up to the transplant team of doctors. They are the ones calling the shots and they do confer about my case all the time.

I spoke with my transplant coordinator today and she said the same thing my onc did that they look for response to chemo and that partial response does not necessarily mean they will delay, but it's going to come down to the rest of the testing too. She did say she would call me if any of the plans were to change and I didn't hear from her, so I am going with it looks like it's a go.

She said they may go ahead with the collection and do another round of RICE, or possibly a different regimen for a round...I am hoping not at this point, but it's out of my hands at this point. It's just the damn waiting game...is it thursday yet?

SUV is Sugar Uptake Value for the radioactive sugar they inject in the pet.

Michele23
Posts: 168
Joined: Mar 2011

Keep you chin up Beth and hold strong to faith.In other words "BELIEVE" Michele DX95 FNHL3

CountryGal7557
Posts: 164
Joined: Feb 2011

my daughter is always saying "Mom, think Positive" it's not easy, but she's right. we all need someone to remind us now and then to think positively!

so, Beth, Think Positive Thoughts!!! =)
Hugs
Janelle

miss maggie
Posts: 929
Joined: Mar 2010

Dear Beth,

Thanks for the info about what SUV means. I am aware of what they inject you
with before the Pet Scan. I just have to learn some of the abbreviations.

Oh boy, I am sorry you might have another round of Rice. I know how much you hate
it.

I am praying for you and always think of you. All my positive thoughts to you.

Maggie

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Beth,

So sorry that you didn't get the news you wanted. This disease just plays with our emotions, ya know? At least there was some improvement with the treatment even though it didn't do the complete job.

We are here for you anytime. I'm so disappointed for you but am praying that things will get better for you soon.

Hang tough.

Love,
Donna

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