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Questions about suspected relapse.

Questions about suspected relapse.

Posted by it goes on on Sep 29, 2014 11:00 pm


Hi Everyone,
I am a 25 year old girl who was diagnosed with stage 3B hodgkins lymphoma almost two years ago. I am just over a year of being cancer free now. However I have been struggling with my health since my chemo ended. I had my one year CT done a few weeks ago and got a call last week that I have a tumor growing overtop of my aorta.They know it is growing because I had a chest X ray a couple months prior and nothing was there. I have to go now to get another PET Scan to confirm if it is cancerous or benign to either now start a stem cell transplant or have open heart surgery to remove it.
Wondering if anyone has any information on relapsed lymphoma and if this is common or any info?
Thank you guys,
Kirsten

Re: Questions about suspected relapse.

Posted by Nicole_admin on Oct 1, 2014 9:34 am

Hi it goes on, you must be going though so many emotions right now with being faced with the possibility of a recurrence. Do you already have the appointment booked for the PET scan? You may find it helpful to read an inspiring recent feature we had about a community member, Windancer. He shared some of his story, and although his journey was different than your own as he faced testicular cancer, he also experienced lymphoma twice. 

If you're looking for more information on recurrences of lymphoma, I would also recommend that you contact the Cancer Information Service. They can provide you with reliable information about recurrences of lymphoma, and can be reached by calling 1 888 939-3333. I'm sure you will find them to be very helpful. 

Have any other community members been faced with a recurrence of lymphoma?

Thinking of you,
Nicole

Re: Questions about suspected relapse.

Posted by Windancer on Oct 2, 2014 9:57 am

Nicole_admin wrote:
Have any other community members been faced with a recurrence of lymphoma?
Yes I have, I had an autologus stem cell transplant in 2003 and an allogeneic one in 2008 to try and combat this.

Terry
"Never Give Up, Go Around, Go Over, Go Through but Never Ever Give Up".

Re: Questions about suspected relapse.

Posted by it goes on on Oct 2, 2014 6:14 pm


Thank you for your relpies, my appointment for my pet scan is next thursday finally after a long wait since their machine was experiencing difficulties.
Windancer, I am wondering how long you were in isolation for with your autologous stem cell transplant? And how that experience was for you if you dont mind sharing. I live in a small town so would have to go 12 hours away if I need to have this done so am nervous as I am use to having the support of my family.
Thank you :)

 

Re: Questions about suspected relapse.

Posted by Windancer on Oct 3, 2014 11:48 am

it goes on wrote:
Windancer, I am wondering how long you were in isolation for with your autologous stem cell transplant? And how that experience was for you if you dont mind sharing. I live in a small town so would have to go 12 hours away if I need to have this done so am nervous as I am use to having the support of my family.
Thank you :) 
I had my autologus SCT at the RUH in Saskatoon in May of 2003, fortunately it all went very well. I had the harvest done in April 2003 and as I said the actual transplant in May. I'm not sure where you are now but I have often told people the transplant is quite easy compared to all the crap you have already encountered. I often refer to it as anti-climatic, you just let the blood and stem cells flow back into you through your PICC line. It is all the previous crap such as the harvest, the chemo etc. that really causes all the pain. Your recovery will be different than mine but I'm sure you will do well especially at your young age.

This may not be indictive of you so the docs may have other plans, but I went home to Regina just 5 days after my transplant so I really wasn't in any sort of isolation, but I did have severe limitations and things I couldn't do. Where do they want to do this?

Now my allogeneic SCT in Montreal was a much different story........LOL.

Terry
"Never Give Up, Go Around, Go Over, Go Through but Never Ever Give Up".

Re: Questions about suspected relapse.

Posted by it goes on on Oct 3, 2014 10:07 pm

Hi Windancer,
Thanks for your reply. I noticed you mentioned you had "the harvest" done in April before the actual transplant, wondering what that is? And how long was your chemo before hand? I live in a small town in BC, so I would be going to Vancouver to have mine done and they said I would be away for months so its always different for everyone I guess!