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Follicular Lymphoma Very Alone Deciding First Treatment

Eva305
Posts: 1
Joined: May 2012

Hey, everyone! I am very scared and very alone. Thanks for all your eye-opening comments. I've been on Watch and Wait for about 2 years. Now The tumors have grown and my oncologists, first and second opinions, agreed to start me up on treatment Treanda+Rituxin has been recomended by one and CHOP+Rituxin the other who has also mentioned the possibility of RIT. Do I have to be free of cancer in the Bone Marrow to qualify for RIT? I haven't had my bone marrow biopsy EVER, so I don't know if I have it there or not. I am stage "a3" (without syntoms)(feeling terrific, actually)- I am more inclined to BEXXAR (RIT) or Bendamusine+Riruxan (Treanda+Rituxin. Which one will be the most effective and less sinister? Please, help me. I feel so alone and scared!

dannen
Posts: 2
Joined: Jun 2012

EVA, DID YOU RECEIVE MY COMMENTS? EVERYTHING DISAPPEARED WHEN I HIT PREVIEW. DIANA

anliperez915's picture
anliperez915
Posts: 757
Joined: Sep 2011

Hi Eva,
Sorry that you have to be here but welcome to the group. My name is Liz, I don't have the same NHL as you but did have Rituxan for treatment. My dx is Splenic Marginal Zone lymphoma stage 4, with tumors in spleen, liver and bone marrow involvement. Rituxan is a milder form of treatment but some people do have reactions to it (like myself) but mostly its not as harsh as other treatments. I've heard very good things from people on this site that have had Bendamusine/Rituxan and are doing very well. I only had Rituxan without the Bendamusine in Feb of this year and in a week or so will see my Onc to see if the medicine worked or not. Sorry that I don't have more experience on the other treatments but lots of people here do hopefully they will comment on the treatment soon. I did watchful waiting for about six months and after I changed Oncologist in January my new Onc decided to start treatment in Feb. I feel good the only thing bothering me right now is pain in my back. Well take care of yourself and let us know what you decide for treatment.

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3180
Joined: Jul 2010

Hi Eva,
I'm so sorry you are feeling scared and alone. I remember all too well feeling the same way back in June of 2010 when I was diagnosed with Follicular NHL-stage3(no bone involvement)grade2-typeA. I had tumors in my groin, stomach, neck and one larger tumor under my left colar bone. I was treated with the CVP-R chemo protocol-(Cyclophosphimide-Vincristine-Prednisone-Rituxan-(6 rounds). CVP-R is considered a milder treatment in comparison to R-Chop and some of the others you listed. I'm not sure why doctors choose one or the other for first line chemo. As explained to me by my Onc...use the mildest protocol and graduate to harsher forms with each recurrance. Each doctor is different though, so you need to ask your doctor which one is best and "why" it is better for you. You might want to ask your doctor why a BMB hasn't been done yet to determine marrow involvement, or not. I've only had one BMB and would rather not have another one anytime soon. Creepy painful experience for me, but thats not always the case when getting one done. I recommend being put under for it with no memory or pain involved...I'll definetely demand total sedation if another is required from me. I cannot answer your question about qualifications for RIT, as that was not used or suggested for my cancer. Just write down all of your questions and present them to your Onc. You are not alone Eva, and someone is always here to lend support for you. Please let us know what treatment is decided upon and then those that have gone that route will be able to help you out better. Take care and best wishes...Sue
(FNHL-Gr2-Stg3-TypeA-Dx6/10-age 61)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1244
Joined: May 2012

Eva,

I would ask both doctors face-to-face: Why is your treatment recommendation better than the other guys ? Let them make their case.

Some patients are very informed and study issues, but most do not. You are in the former group, which will help you a lot. I have known many cancer patients who, years after treatment, did not even know what drugs or treatment they had received. Utterly incredible, to me.

The oncology group that I went to, in general, had the "blast it with the biggest gun in the room" approach. The idea there is to try to eliminate the disease as quickly as possible, but this approach limits subsequent treatment options, if there is a relapse at some later point (it does not eliminate ALL subsequent options, just some).

The treanda-rituxan proposal is a more minimalist approach, which ties in with the use of "Watch and Wait." It sounds like you have "indolent Disease," or "slow moving." While I had a rare form of HL, I was "A" (unsymptomatic and indolent) also. The advantage of the minimalist treatment is (mostly)fewer side-effects.

I did not receive any of the drugs proposed for you (obviously you have some form of NHL) except rituxan, but from a lot of reading and following friends with other diseases, I think all would agree that T-plus-R is a much milder road than r-chop. As to which is "more effective?" No layperson writing here can probably answer that question for you, which returns us to forcing the doctors to make the argument for their approach.

I recommend that all patients beginning chem get an IV PORT installed. It will make long-term treatment much easier, and can dramatically lessen small-vein damage. Installation is a short and safe surgery. Also, ask for a port that is "CT Contrast Compatable." Mine was not. The CT form just allows ct contrast material to be administered via the port itself, rather than an arm IV being established for each CT and/or PET scan, and you will be getting a lot of these, no doubt.

Bless your decision. Being informed and hands-on in the decision making is your strongest weapon at this point.

max

Kalylis
Posts: 10
Joined: Jun 2012

Hi Eva.
I was diagnosed with stage 4 Follicular lymphoma January 2011. I had r-cvp for treatment. I completed treatment in September and am currently receiving rituxan every two months for maintenance. I have heard alot of good things about rituxan but I have not had great experiences with it myself. It is a scary time and a difficult dissision on which treatment to have. I had 8 rounds of treatment and am in a remission with a 75% decrease in size. My brother in law was diagnosed with difuss large cell lymphoma a month after me and he received CHOP for his treatment. Even though his type of lymphoma is completely different. After only 4 treatments, his CT scan showed a huge success. Just to be safe they completed an additional two treatments and has been cancer free ever since and is feeling great. I have not yet experienced a relapse and have only received one type of treatment. Just remember it's okay to be scared and ask your doctor and nurses tons of questions. The nurse support I received during treatment really help get me through it.

GKH
Posts: 338
Joined: Jul 2012

I believe we have a very similar diagnosis. I hd 26% in bone marrow but no bulky tumors. I went with Rituxan monotherapy. First I took 8 weekly infusions and have been on maintenance about 8 mos. No hair loss just fatigue, joint pain and leg muscle pain.I am very active and force myself up and about. Never lost my appetite but did lose 20+ pounds during my initial 8 week therapy. Hope this helps with the decision.

nancynurse1954
Posts: 15
Joined: Aug 2012

I was diagnosed with follicular lymphoma grade 3b in May/2012. I can't explain the grief I felt when I was told that the lumps under my arms were highly sugestive of malignancy. After my surgical biopsy I went into a severe depression. I think it is even harder to accept when you are a nurse dealing with patients with cancer and you think you are immune to getting a disease like this. I already got 4 weeks of rituxan alone. Had my follow-up PET CT last Monday and tomorrow I will know if this worked for me. My underarm lumps got very soft and my neck lumps disappeared. I am mentally prepared for whatever the doctor tells me. I am also taking anti-depressants wellbutrin 100 mg twice a day and this has helped me significantly together with psycho-therapy. I saw this web site and loved the support and wonderful people that are also dealing with this disease. Just reading all the comments have lifted my spirit 100%. The journey continues but this time with a lot of optimisum and faith :)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1244
Joined: May 2012

Nancy,

Let us know what you learn. It is a very positive thing that you are treating your depression while this goes on. Emotions are such a large part, and emotional wellness is critical to fighting over the long haul. I sounds like you are doing all of th right things at this point.

Hoping for good news,

max

.

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

nancynurse1954
Posts: 15
Joined: Aug 2012

Just came back from my Oncologist. Sadly I am not in remission...... :( I will require more treatment. I sat with my Doctors and my nurse and cried out my frustration. I will not give up! I thank God for having the wonderful support of my health team and above all my loving family whom are my dedicated coaches. I thank God for giving me the strenght to walk along this difficult road to remission. I trust in God that I will reach the finish line someday soon...........

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1244
Joined: May 2012

Have they said what your treatment will be ? What is the next step ?

max

onlytoday's picture
onlytoday
Posts: 598
Joined: Jun 2010

Eva,

I am sorry to hear of your diagnosis, but glad you found this sight. Great people and information here.

I was diagnosed with Nodal Marginal Zone Non-Hodgkins Lymphoma in 2010. They did the diagnosis by blood work, biopsy and bone marrow biopsy. Because I had node and bone marrow involvement I was classified as stage IV. I was treated with Rituxan - four infusions over one month.

In May of this year I again had a bone marrow biopsy because my blood work was off again. I am now receiving Bendamustine with Ofatumumab. Bendamustine is a milder chemo than CHOP- according to my doctor. Ofatumumab is a monoclonal antibody like Rituxan but made from human protein instead of murine protein.

So here's my experience: I find the bone marrow biopsy to be slightly uncomfortable. No big deal. It's over very quickly.(Everyone's experience is different) Rituxan didn't work out for me- I ended up being allergic to it. Bendamustine causes heartburn,temporary urinary incontinence, fatigue and nausea. Ofatumumab gave me hives all over on the first test infusion. I became de-sensitised to it and am now fine with it. The bendamustine/ofatumumab combo is very effective with me and I only have two more rounds and I'll be done. (Total of six. Two consecutive days of treatment each time) I truly believe it will give me a complete Remission.

It seems like you have an indolent lymphoma (slow growing). If so you may know already that it is treatable but not curable. But it is a cancer that you can LIVE with for many years. I never knew there was a chronic cancer - but that's what it is. Crazy. I can honestly say that I feel better today than I have in years- which makes me think that I may be in Remission. When I was first diagnosed the doc told me that I probably had it for about 3 years with no symptoms or diagnosis!

This may be too much information(if there is such a thing). But as they say knowledge is power- and we want to arm you well to fight this beast!

The best to you. Please keep us posted on your progress.

Hugs,
Donna

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