Remission for Follicular lymphoma IF NOT CURABLE then what does this mean?

I have had many replys to my posting of treatable but not curable. Thank you all for your reply on this.

I am in remission now and have already had my first maintainence of Rituxan.

QUESTION

Why do we do the drug maintance of Rituxan?

Why only for 2 years?

So if not curable my understanding is that it will come back at sometime? Reason being that what every caused this to begin with the first time, will cause it to show back up again for sure?

So if it comes back is it harder to treat?

Will a different treatment of drugs be used the second go around?

I handle the chemo pretty good (no depression then) but sure am battling it now, and yes I am on somethng for depression. Have talk to the doctors about and they changed 300 mg, was taking 150 mg. I am single, no roommates, I think maybe becasue family was around for all those months of chemo and now they have stop coming around. so am alone alot now. still unemployed, so money is tight also. just wish I could stop crying so much, You would think it would have happen during chemo not after..LOL...always praying for God's blessing & healing for you all..

justme-
You asked "if not curable my understanding is that it will come back at sometime?"

Answer is 'Probably.' I don't know if anyone could tell you with any certainty when or if it will return. The point of the Rituxan maintenance therapy is to stem the cancer's ability to return for longer than the chemo might put it off. That's really what you're doing right now, what might be called preventive immunotherapy (although I just made that term up so don't re-use it and expect anyone to know what it is ...).

As for why only 2 years ... it's possible that studies show that any longer than 2 years does not provide any additional benefit compared to the potential toxicity profile, or that, seriously, someone several years ago, using the drug's general profile, postulated that 2 years was a reasonable time frame and studies ever since have adhered to that 2 year structure. Or maybe there's some really sound science behind it.

"If it comes back is it harder to treat?"
Common sense says yes-- the thinking being that when it returns it does so armed like a virus with the smarts to resist the last treatment-- but common sense also says the earth is flat. There are a number of so-called second-line therapies for follicular lymphoma, and they differ from the first-line therapies (i.e. in terms of drugs used and regimens assigned for combination chemotherapy) but they also include things like radioimmunotherapy -- Zevalin and Bexxar. This kind of addresses your question about whether different drugs will be used-- the answer is probably, although it depends.

All that said, your cancer was graded at 3 so, **** I kinda wish I'd remembered that sooner, but grade 3 FL is aggressive enough that it might be considered curable. If I look up second-line therapies for FL grade 3, I find that I'm directed to the same second-line therapies used for diffuse large B-cell lymphoma. Remember that the primary reason your cancer is not, generally, considered 'curable' is because it grows too slowly to be fully responsive to chemo and radiation. The more aggressive the cancer, the better it 'should' respond to these treatments--- why? Because human cells, healthy and cancerous, undergo a 5-phase cycle of division to grow. Chemo drugs are often cell cycle specific, meaning they target one or more of the phases of the cell cycle. Combination chemo puts chemo drugs together that target different phases so that whatever phase the cancer cells throughout the body might be in when the drugs enter your system, the regimen should have them covered.

So, the more often the cancer cell undergoes division, the more vulnerable it is to one or more of the chemo drugs to step in and stop the cycle, killing the cell.

Since your cancer is grade 3, it's more aggressive than most FLs and therefore potentially more 'curable' than lower-grade FLs.

Hope some of this makes sense,
Ross

I too went through major depression, well still am but not as bad as I was.What meds did they put you on for that because mine is not very good! LOL.
by the way, I asked so many specialists about maintenance rituxan and the consensus was to NOT do it because it can make you resistant to it and it might be something they use again later.
And R does not prolong your survival. Just might want to get 3 opinions because drs are either very for it or very against it.

Lani-
Resistance to Rituxan is a possibility, but it's a possibility with every anti-cancer drug, every drug really for that matter, and foregoing rituxan when it's needed merely to preserve its efficacy in the future could be extremely self-defeating, if you know what I mean.

Beyond that, a very influential Cochran Review of rituxan maintenance concluded that it should be made standard therapy for FL.

That said, every patient is different.
Ross

I got three opinions on the use of Rituxan as a maintenance drug, following chemo. Two oncologists said yes and one said no. The one oncologist (from Memorial Sloan-Kettering) who said no, has since changed her opinion and now includes Rituxan in her courses of treatment for NHL. Badda bing.

My wife has Follicular Lymphoma (treatable but not curable) and has been in remission for 5 years. After her initial Chemo treatment (R-CHOP), she was given the "standard" two years of Rituxan Maintenance.

On December 30th 2010, a biopsy of a mass in her abdomen confirmed that her Follicular Lymphoma was back (almost 6 years to the day).

The Chemo Port has been placed and she has an appointment with her Oncologist tomorrow (Jan 6th 2011).

I'll try to keep the group posted on her progress with any second round Chemo infusions and/or other treatments that are required.

Hi relfkee1, sorry to hear that your wife is in the recurrent stage of FL. Do keep us posted, please. I am doing watch and wait since the focused beam radiation failed to stop it. When this phase is over, as it inevitably will be, my hope is that other regimens may have been approved in the States (such as Bundamustine + Rituxin). The lit I have seen seems to show excellent results with fewer side effects. Right now, I am scheduled for my next scan in March, hopeful that the read will let me ride this out this way for another year, anyway (maybe longer, who knows).

If I can then come out of treatment in remission for six years as your wife has done I will consider that a huge victory since it will put me at the median OS factor of 8-10 years with just one chemo run. I think that would be a great thing...of course, it could transform anytime and then I will be in a dogfight but we all face that possibility with FL.

Anyway, good luck to your wife, I hope her treatment is as uneventful as possible and I wish her good health on the other side.

good health,

kermica

Check into Zevalin for her first relapse. It's one dose, no hair loss, minimal side effects with good results. (from what I've been hearing and reading).

Ask to make sure the treatment won't be too harsh as to possibly compromise the success of a future bone marrow transplant. Please let me know all of the options that are presented to her.

I'm always wanting to learn new treatment options and clinical trials. You might want to try to search the website www.clinicaltrials.gov.

Your oncologist probably won't know about all of them that might pertain to you. You can put in search words and chose only Phase 3 & 4 trials, if you wish.

Lani

Thanks Kermica & Lani for your response. I'll pass along the words of encouragement to Lydia.

I'll post the results of todays meeting with the Oncologist tomorrow (Jan 7th 2011).

So far, I've been very impressed with his knowledge and compassion. I hate to say this, but I think it makes a difference when your Oncologist has a wife that also has cancer (cervical) and is in remission. He has first hand knowledge of our feelings and concerns.

Good luck to both of you on your recurrence/relapse, and maybe what we find out from our experience will help you in your future treatment decisions.

Ken

Went to the Oncologist yesterday (Jan 6th).

Chemo for the recurrent FL will consist of R-COP, every 3rd Monday for 6 treatments. It was decided that the R-CHOP she originally had 6 years ago would be too dangerous for her existing Pulmonary Hypertension, so the "H" component was removed.

Don't know if her heart problems which have developed over the past few years were a result of the previous Chemo on not. I would welcome comments about Chemo and similar heart problems from anyone with prior exprience.

I'll update the group on the progress of the Chemo as the treatments progress.

Ken

Hi Ken, I'm glad to hear there is a plan being developed for your wife, good luck to her. The H in CHOP stands for Doxorubicin and it is the most toxic of the chemo drugs used to fight lymphoma. It definitely has the potential to be heart toxic, according to my cardiologist and marginal patients often undergo additional prechemo testing to ensure that they can tolerate it.

Here is a link to a datasheet specific to doxorubicin which lists its side effects, I hope it is helpful. Good luck with the treatments and keep us posted when you can. We are all pulling for you, especially us FL folks who know we will be walking down the same path as your wife is in the future.

http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPt/Doxorubicin.htm

Good health,

kermica

Thanks Kermica,

I'll look over the datasheets on all the drugs she'll be taking. Thanks for the link.

I'll keep updating the group as soon as possible after each treatment and after the 6 dose round is over in May.

I guess the follow-up PET scan will tell the tale.

Ken

Did you discuss zevalin or Bexxar or any other type of treamtments. That's not the protocol I thought you were going to come back and tell us.
I'm sure the oncologist knows what he's doing and knows Lydia's case best.

If you get a chance, search for webcasts and podcasts for a hemato-oncologist by the name of Stephanie Gregory from Chicago. She makes alot of sense and is not afraid to contradict what some doctors think. She looks at the long-term plan while some doctors just want to treat for right now (like my oncologist admitted to).

I guess age is a big decision maker in that aspect. How old is your wife?

Good luck and let us know how she does. Yes, the red devil "H" in chop is really hard on the old ticker.

I was reviewing clinical trials and picked out a handful that I thought were helpful for FL. If you go to clinicaltrials.gov and type in or cut and paste the trial identifier numbers below, they will come up. Just ignore the little notes to myself, they will be in the trial ino pag anyway.

http://www.clinicaltrials.gov/ct2/show/NCT01130194?term=follicular lymphoma

NCT00530140

NCT01078142

NCT00487305 Lymphoma accessible for sampling or existing cryopreserved lymphoma tumor judged suitable for vaccine preparation

NCT00719563

NCT00004031 Arm I: Patients receive CHOP (or CHOP plus rituximab [CHOP-R]) as above. Treatment repeats every 3 weeks for 3 additional courses. After completion of chemotherapy, patients are encouraged to undergo harvest of peripheral blood stem cells (PBSC) for possible use at time of relapse. After completion of 8 courses, patients receive no additional therapy until disease progression or biopsy-proven disease.

NCT00463463NCT00463463 PARMA study continued Zevalin BEAM auto transplant

Lani,

Thanks for the information.

I did ask the Oncologist about other "newer" treatments, but he advised that, because of Lydia's sucess with her first round of Chemo, he would rather persue the re-use of "standard" Chemo now and save the newer treatments for the next relapse.

Do you know if it's true that leaving out the "H" from the CHOP thrapy will keep Lydia from losing her hair. She's concerned that even though her Oncologist told her that she probably would'nt lose it, that the other drug side effects include possible hair loss. She's been wig shopping lately and would like some guidance.

Thanks again, Ken

This is such good information! My brother has Follicular Cell NHL, just took his 2nd chemo of R-CHOP. Stage IV - spleen was sooo big he looked like he was 9 months pregnant. So it is in his lymph nodes, spleen and bone marrow. We are PRAYING FOR A MIRACLE!! Our family is so scared! I am a nurse and I have heard great things about Rituxan... a miracle drug they say, and we hope so. My brother is 58 otherwise in good health. How do people say its in remission after 2nd and 3rd chemo? Do they do a bone marrow biopsy? Any advice would be great! Thanks for all the blogs!
Janice