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New here....but not to lymphoma - glad to have found y'all!

tryshz's picture
tryshz
Posts: 14
Joined: Jan 2017

 I have just started a Rituxan maintenance once every 8 weeks for 2 years. I have great reservations about it - but it seemed to be the best course for me.

I was diagnosed at the very end of 2009 with splenic margianal zone lymphoma - had 8 rounds of CVP-R - had a terrible reaction to the Ritusan the first time I got it, but not since. After the chemo, I went to the Massey Cancer Center in Richmond, VA - to discuss options for a more permanent remission - choices were Stem Cell Transplant or Zevalin. The stem cell just was not feasible, and I got the Zevalin in November 2010. In remission for almost 5 years - but it came back in multiple areas in the summer of 2015, and fall of 2016. Both of those times, I received Rituxan alone - 4 treatments one week apart. It was only partially successful, and about half the 'innumerable' lesions got smaller, half got bigger. Hence the maintenance plan. Started that right after Christmas....next treatment and seeing my onc in late February.

My biggest fear is that this won't work either - and I have no idea how I will ever be able to pay for it. I'm retired - as is my dear husband, and the only insurance we have is Medicare. We sold our home in Virginia and moved to the country in North Carolina - loving every minute of the slower paced life! We chose to go to original medicare so we could keep going to our doctors in Virginia - and so far the trips back and forth are a nice diversion - I know that each treatment I get - my co-pay for it is just over $1000 - thus the maintenance will add up to $8000 - so we will trust that God will show us a way to pay.

Has anyone here been on maintenance Rituxan - any insights on how it works - from my reading - it's about a 50-50 thing - 

Thanks for letting me ramble on....nice to have a place to do that.

tryshz  Embarassed

 

po18guy
Posts: 1083
Joined: Nov 2011

Sorry to hear of the finiancial diffculties. Do you have Medigap insurance? That will bridge the gap in Medicare coverage. Since Marginal Zone is an indolent lymphoma, that gives you time for new treatments to enter the market. Although it is similar to Rituxan, there is another drug that is even more potent: Arzerra (Ofatumumab). It is in clinical trials and promises a great future in varous lymphomas. It is something to look up in clinical trials. Remember that the cost of the trial drug is carried by the pharmaceutical company. 

As to worry about various treatments not working, I have had 7 different salvage regimens after induction and consolidation therapy. So far, I have received 18 different drugs, at least four of them twice. So, there is always hope.

tryshz's picture
tryshz
Posts: 14
Joined: Jan 2017

Thanks so much for replying and being so encouraging! Do not have Medigap insurance - actually looked into it because of the treatment plan - but it is yet another case of 'if you didn't get this the first year you COULD, we're gonna fine you forevermore' - making this a too expensive option.  

Thanks also for the heads up on the new treatment - will be looking that up tomorrow. Good to know that there are other options out there, each one another reason to never give up! Thanks again!

JanieBon
Posts: 1
Joined: Apr 2015

We are not on Medicare but I pray to be soon. My husband has PTCL. We are on private insurance as hevfefuses to go on Medicare. Working means too much to him. On private insurance, we have to pay out $6,500 before we are completely covered. I tried to reason with Al but his heels are dug in. I DO understand. Working and private insurance mean too much to him. But I didn't know what to do. We didn't HAVE $6,500. So, zi decided to go to Financial Assistance. I had a big bill at the Mayo Clinic. While they wrote off the bill, they were not nice about it. I leftbhumiliated and in tears but at least that horrible bill was gone. Then I had to go to my husband's hospital and wow, did I dread it. I was so happy when they were kind and gracious about it. We got assistance for a whole year. They paid anything the insurance didn't. I was so grateful to the charity and God. I don't know if this is an option for you. Just thought I'd tell you about it.

sooz1
Posts: 3
Joined: Aug 2016

Hi y'all I'm new as well and glad to find you.  I was diagnosed this time last year w Gastric Malt Stage 1E after multiple tests done due to nausea.  Treated in August 16 with Penn University Radiation and had good results on my post radiation biopsies Thank God.  The problem is I am still nauseas and its been 4 months past radiation.  I see my oncologists in March.  Thanks Sooz

 

tryshz's picture
tryshz
Posts: 14
Joined: Jan 2017

My next step is to find out what resources there are thru my oncologist office. Hoping they have some kind of plan in place that I would fit into. Thanks for the info - and I'm so sorry you had such an awful experience at the Mayo clinic - but glad you had a good one later on. Thanks for answering!

Sammi_2's picture
Sammi_2
Posts: 1
Joined: Jan 2017

New here...just started Rituxin treatment for Non Hodgkins MALT lymphoma...anybody out there with MALT? Wondering how well it works?

tryshz's picture
tryshz
Posts: 14
Joined: Jan 2017

No, sorry - I don't know anything about MALT lymphoma - hoping someone else does, and will respond! I do know that Rituxan up til this last time has worked wonderfully for me. Hope it does for you too!

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I have been on the Rituxan maintenance since March of last year. I was diagnosed with follicular non-hodgkins lymphoma in Dec 2014. So in 2015 I had 6 cycles of R-Chop followed by 3 cycles of RICE when the R-Chop didn't get it all. The oncologists were looking at doing Stem cell in 2016 but there were a few issues so it didn't happen. I was declared to be in remission Nov of 2016, 1 year after the last chemo. Before I even started R-Chop the financial office of the Cancer center I go to said there was a program that will reduce the cost of the Rituxan. I believe they have to renew it each year, but they take care of it all. 

I still work and have insurance through the company. When I turned 65 I had to apply for medicare so I don't get hit with the penalty when I do decide to retire. I have been surprised how it all works. My main insurance pays their part and Medicare pays the difference. The only downside is I signed up for FSA and now realize I over-estimated what we needed because I didn't realize how much medicare would pay.

I have a sister-in-law who had MALT. I didn't remember what treatment she had but I do know she is on Rituxan maintenance now. She calls it her SPA day and has gotten me to do the same thing. Take the day off from work, pack a lunch & favorite snacks and a book to read. Just sit back and relax. 

When I was told the SCT was off the table I asked what would happen if my lymphoma came back. I was told that there are new treatments and new drugs being tested or in clinical trials. Those would be tried first.  I am not saying SCT is wrong. There are some whose cancer can only be beatten by SCT. Only time will tell if I will need more treatments or SCT. There are a lot of options for treatment of the blood cancers. We are very lucky for that. 

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