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Need information - docs don't agree on treatment!

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

Hi all,

I really need some help here. Here is my story. Diagnoses on May 27 with Follicular lymphoma from a core biopsy. Had a total excision of a lymph node 2 weeks ago and now dx has changed to marginal zone with probable malt lymphoma in my stomach. I am tired (anemia) with stomach discomfort in the upper ab area., some itching and eyes seem to be affected. Pet only showed groin lymph node but doc said indolent will not show on pet if it's inactive. They believe there is a lot of involvement in my abdomen. I also have bone marrrow involvement making it stage 4.

So the delemnia is this: Doc number 1 says : get a biopsy of stomach, mri of abs, get eyes schecked and then start Rituxin. (by itself) Second opinion doc wants to start R Chop (or another mix) next Friday.

Hmmmm. So what to do??? Doc 1 feels that the slower approach is appropriate with the need for chemo postponed if even for a bit to avoid unncessary toxicity. Doc 2 wants to just do it, she said bone marrow involvement means you need chemo. Since I AM NOT A DOCTOR I don't know what to do. Both docs are from huge medical centers and are really great.

My concern is the long term effect of either route. If I go with Rituxin will it change how chemo acts later? Might it really get me into a remission? Can it with the bone marrow involvement ? I love the idea of Rituxin (a little less harsh) but I don't wao make th ewrong decision. Probably need a third opinion..but then again, you guys probably know enough to really help me make a sound decision.

Hellllppp!! :) You are all great thanks for your help!

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

that is a tough decision, you did not say but both doc's are Oncologist's right? I hate to say this but I would go to a third party and see which way they lean toward. It's really hard to make these kind of decisions, you are so right we are not doctors. Each one probably has solid reason's for their diagnosis, but to be that far apart..... I would get one more opinion. Good Luck Vinny

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I HAVE TO AGREE WITH VINNY. ITS TOUGH WHEN DOCS DON'T AGREE. IT MAKES YOU FEEL INSECURE AS WELL. THAT 3RD OPINION IS NEEDED. MAKE THEM EXPLAIN THEIR REASONING BEHIND THEIR DECISIONS. LYMPHOMA IS NOT RARE FROM WHAT I READ AND THERE ARE PLENTY OF STATS TO BACK UP WHAT WORKS AND WHAT DON'T. AGAIN,IF I AM WRONG ABOUT THIS SOMEBODY OUT THERE LET ME KNOW. SOMETIMES WE CAN'T GO BY THOSE STATS. JOHN

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi - my situation sounds a bit like yours. Diagnosed Sept. 2009 with NHL, B cell follicular, stage 4 - I'm 67 and healthy as a horse until this happened - no warning. My CT scans DID show many nodes involved in the stomach and ab area - biopsy showed all were maligant, including the largest one under my small intestines. It's size was only 5cm., so my local Oncologist said to do "watchful waiting" until that one grew to 10 cm. He sent me to Moffitt Cancer Center in Tampa, FL for a second opinion - we were able to see 5 Dr.'s that day, including the head of the Lymphoma Dept. They all agreed - until it's 10, no treatment at all. 9 months later, my May CT showed it had suddenly grown to 12 - time for treament. Doing Rituxan before CVP chemo goes in - have gotten through 2 chemos and was ready for 3rd this Tues, July 13 UNTIL dangerously low white cell counts on past week's blood work showed up. They must come down in 4 areas before another treatment. My paper on Rituxan says with this drug, bone marrow depression may occur. Decrease in number of white, red cells and platelets (happening). Oncologist's nurse said to completely avoid contact with anyone other than my husband so I'm doing that. Spent 9 days in hospital in June following first chemo with severe abdominal pains which they were able to stop with Morphine, but never did find where they came from. Hope I make it through 4 more chemos to complete the cycle. Let me know what you decide and good luck.

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

Thank you Vinny, Cobra, and Cooking. I am pretty convinced that I won't be able to make this decision without a third opinion. I am having a detailed conversation with the second opinion doc on Tuesday, maybe she'll shed light on this further.

Isn't it amazing, when you are at your lowest physically and emotionally drained and yet that is when we need to make these HUGE decisions! I know you/ve all been there and truly appreciate the support. I am going to ask each one for the statistical data to back their opinions.

Thank you soooo much. I feel better just talking about it with you all. There is nothing like talking to people who have walked in your shoes.

Hope you are all doing well and I will post my decision eventually!

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Just adding my 2 cents worth(probably only worth 1 cent in this economy). If it were me I would get that 3rd opinion and because of the big difference in them your insurance company will not have a problem with it. So sorry the water has to be so muddy for you, but it will clear. And yes it is difficult to make all these decisions when your stressed,confused and not feeling well. Good luck. Mary

Hoppy23
Posts: 26
Joined: Jul 2010

Hi. I am sorry you have to go through all this. My advice is to get a third opinion for sure and see where things will be at. My husband had sort of the same situation, one lab said he had large cell grade 2 and the other said small cell grade 1. We had to check with another lab in a completely different country to see which one was right. It turned out lab 2 was the correct one.

Good luck.

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

Thanks Merry and Hoppy and everyone!

I'm calling Sloan Kettering tomorrow to go for a third opinion. You all really helped to clarify my thoughts on this and I cannot thank you enough. Love this site - you are all amazing and I hope and pray for all of you that you have restored health and all good things.I'll keep you posted on my progress!

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

Good Luck to you, and Sloan Kettering has a wonderful reputation. Glad to hear you are getting another opinion. Just FYI, my onc told me the top dog in all talks and conferences for Lymphoma is a doctor from the University of Nebraska. I cannot remember the man's name (it's been 4 years) but I'd be happy to ask when I go for my next treatment.

Good luck honey!

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

Thank you so much! I called Sloan today and expect to hear from them tomorrow. I'm lucky to live between NY and Philadelphia and to have access to such great facilities. The doc in Nebrasa sounds great too! Thank you for your thoughts. You guys are all great! I feel like I have another family to support me - my lymphoma family. And I fully intend to support all of you as well. Blessings to you.

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

Thank you so much! I called Sloan today and expect to hear from them tomorrow. I'm lucky to live between NY and Philadelphia and to have access to such great facilities. The doc in Nebrasa sounds great too! Thank you for your thoughts. You guys are all great! I feel like I have another family to support me - my lymphoma family. And I fully intend to support all of you as well. Blessings to you.

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