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NLPHL 50-60 % shrunk afer 4th treatyement PET scan.

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

My lymphoma shrunk 50-60 after after 4th treatment, Well I guess it's good news that ABVD is working as expected. Yesterday was my 6th treatment. I remember my first one once I said (1 down and 11 Togo :). My oncologist told me I am going to have a CT scan after the 8th one but not a PET scan (don't you think that PET scan is more efficient that CT scan). and he said if everything cleared up we may stop the treatment at 8 (4th cycle). I really love to do that, but I have concern about relapse if I do not finish all 6 cycles (is not that I love to go all the way to 6 cycles). And keep in mind that my Oncologist still refuses to use Retuxan along with the ABVD. Any suggestion or insight on this matter will greatly appreciate it.

 

DX : NLPHL - IIIA on February.

 

DadysGirl
Posts: 314
Joined: Aug 2011

Excellent news hopefully soon to remission and cure... Will write later about rituxan on dlbcl which my Dad had...

Im off to doctor for elevated WBC chronic and elevated neutrophils...

 

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

it sounds like good news. Been thinking about you and wanted to know how you are doing. 

Best of luck 

jonathan

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

Do you have to through Radiation too? How many cycles your oncologist assigned, and you are using Retuxan? correct.

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

No radiation for me. I am doing four cycles of r-Abvd so yes for retuxan. I should have a pet scan this month to make sure it's only 4 cycles onc said 6 would be the most but he thinks 4 should do it. I started at stage 4 bes Doctors words were you have cancer from the neck down He is a funny man. 

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

Keep me updated Joemory on your upcoming scan. Good luck

girliefighter's picture
girliefighter
Posts: 206
Joined: Mar 2013

it's working...Yea!!!! This is probably the only situation in a man's life that "shrinkage" is a good thing...lol...Congrats...keep it up you're doing great...anyone who goes through any cancer treatment is a hero to me, this stuff isn't as easy as people think.

Paying for more shrinkage

Carie

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

Thanks for your support and thoughts. At this point I take shrinkage anywhere to get rid of the Nausea, and bad feeling Smile (but maybe not for a long time). Just not sure if I will get the results I am looking for without the Retuxan or even finishing my all 6 cycles.

DadysGirl
Posts: 314
Joined: Aug 2011

My Dad had diffuse large b cell non hodgkins and he saw 90% improvement first 3 rchop, then nochange after 6, then another 1/3 shrinkage after 8th, almost all  lymph nodes were gone completely after even first 3 only some inabdominal remained, the ones in abdominal started growing... had rice 2 times pre sct and saw 40% shrinkage and the lowest Suv value we had seen so far 6...Had sct beam treatment rituxan is not part of it.. Post sct went back in a week later they felt pneumonia noteven possibility of cancer but finally biopsy was done and now in lungs, never had it in lungs even prior to sct....Unfortunately passed away a month post sct... I wish he was given rituxan maintenance  after 8th ... They said lets wait few months maybe inflammation when I asked about the maintenance which they had said he would have, but doc said just that time dec 2011 they said pp who get rchop instead of chop will have no benefits to have maintenance... Again I can't stop not to mention this, but then at the end one can't say what if or if they did that if we believe in God and if it was meant to bedifferent outcome it would have been... They were worried of sct and how he'd handle it but he did so well he tried so hard walked did everything right... Sometimes unfortunately you see badsituations turn out so well and good situations turn out so sadly... No one will have sameoutcome but I wouldn't feel right if I didnt mention about rituxan and what i think it did for my Dad... Wishing you and doc makes the right decision that is best for you...

Rocquie's picture
Rocquie
Posts: 481
Joined: Mar 2013

Hi Bill, great news on your shrinkage. I am not familiar with your type of Lymphoma--heck, I'm barely familiar with my own, so I sure don't know what the treatment protocol is in your case. Though it sounds like the ABVD is working for you. You must have a reason for wanting to use Rituxan and your doctor must have a reason not to. It sounds like you need to have a good talk about it so you can understand the reasons. If you do not agree, or the doc can't or won't explain to your satisfaction, perhaps you need to seek a consultation with another oncologist.

I am correct that you live in North Carolina? I live in the mountains, but I went for a consult at Duke. That was a real eye opener and certainly worth the trip.

As far as your concern about relapse. . .I think anyone who has ANY type of cancer will worry about that!

Take care and remember you are your own advocate. If you are not 100% satisfied with your treatment, seek other advice.

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

Bill,

I mentioned over a month ago to you that 50% or better after your first CT would be excellent, or as good as possible. It matches or beats where Aaron and I were at at that point in treatment, and we both went straight in to complete remission.

If your doc is considering reducing the total number of treatments, then it means that you are so far ahead that he feels you do not need to endure the whole six months. It is only good news. Accept good news as good news !

Also, in four years of treatment and monitoring, I have enver received but two PET scans -- everything else has been CT. Your doc's choice of scans is (based on my experience) totally correct and clinically accurate.

max

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

My only concern is that I did not use the Retuxan with my treatment like you and Aaron. which is in the back of my head feels that I am not going 100% at the cancer to remission. Oncologist said since the SUV MAX is less than 2 he does not recommend going through PET scan only CT.

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Hi Bill and sorry for my late reply.  I think this is wonderful news - Yoohoo!  It also looks like you're not having to endure as much chemo as originally expected and that's good news also.  We all worry about relapse and those extra cycles won't change that :).  If the cancer is gone (remission), I'm not sure extra chemo would do anything except prolong or worsen side effects? 

I'm very happy for the good news!  Hugs - Jim

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

Waiting for the new season 8, starts 6/30//2013. Are you a FAN ?

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