CSN Login
Members Online: 9

Should Retuxan be added to my ABVD treatment ?

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

I have NLPHD , and my DR did not recommend adding Retuxan to the treatment . It seems this kind of lymphoma is highly relapsing compare to other HD, I am afraid that it will relapse if I didn't take Retuxan. Per my Oncologist "steam cell Transplant is the second line of defense if it relapse", please advise.

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

Both onc I talked to said r-ABVD was the way to go for late stage NLPHL. So I would ask just to see what they say. 

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Hi bill, I went on line and dug up every medical journal and study I could find to build my argument for adding retuxan to my treatment. As most here can tell you, sometimes you have to drag the docs kicking and screaming towards the proper course of action

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

Aaron, I tried for the last 2 visits and the oncologist is not buzzing. On my 3rd treatment yesterday I explain to him that form talking to people who took Retuxan have 0 chance of relapsing compere to ABVD alone. He is sticking to the protocol treatment lines set by the NCCN.

I believe we both got the same thing at same stage. (NLPHL 3A). I talked to others on different forms who had ABVD alone and relapse. Our HD is C20 positive and Retuxan designed to kill these B-cells that cause the HD.

 

How you got your onc to add Rituxan to treatment?

 

Thanks 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1000
Joined: May 2012

Bill,

People have been being cured of all forms of HL  with ABVD for many decades now.  NLPHL is successfully treated with abvd all the time. The relapse rate is not high. I would just ask the doctor why he is omitting rituxan. It seems like he would give you a straighforward, direct answer. Pray and hope for the best. ABVD alone has one of the highest success rates in all of cancer treatment.

max

Bill_NC's picture
Bill_NC
Posts: 107
Joined: Jan 2013

Thanks MAX, and that what's killing me, the answer I am getting is not convincing to me. The DR following the guide line protocol without esearching about other treatments that was successful. He said we may use Ritux as second line of defense, I don't want to keep going for chemo after my last one if GOD will or we can go directly do steam cell. I thought steam cell transplant should be the last option, and it should not be discussed at my 3rd treatment.

Anyway I got a second opinion from veteran oncologist on the matter and he was surprise why the DR did not offer it on table knowing that I am CD-20 positive. Also next week I am going to see another oncologist about the same matter. I may even change oncologist as I start the feeling that my oncologist start getting annoyed with my questions at every visit.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1000
Joined: May 2012

It is a good thing to question and demand straightforward answers.  It sounds like you are doing all the right things as an informed patient.  I do not know if insurance may be an issue, but ask that questin as well.

max

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

Max is onto something there, the cost of a bag of rituxan is obscene. You as we'll are on to something, if your feeling your doc is annoyed by potentially life and death questions get someone new who will at least read the study's that show the improved efficacy of adding rituxan to our specific strain. Best of luck bill

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Bill,

  I am so sorry you are having problems getting a medication that usually goes hand in hand with ABVD. This really pisses me off big time. I am having some trouble with my insurance co. as well with what they will cover and will not. There are others that have posted and having Insurance problems. Some meds along with services are no longer covered either. Insurance co. is looking for ways to save money. Unfortunately this is only the beginning. It is slowly elimamating a lot of expensive meds. I stated this back in NOVEMBER 2012. We could have put an end to this rediculous Health care program right then and there, but it was allowed to go on with another term. It is going to get worse as time goes on. Those that supported another term have no reason to complain now. The last time this was said I got only one  response that read, "You are not preaching to the choir."Now I am preaching to the victims and I along with a lot of other people are one of them. This is all we need having a disease that is so expensive to treat. Too bad so many people kept their heads in the sand for the last 4 years. Sorry I sound so negative, but the proof is in the pudding.  John the Preacher

  BTW: Before the person that feels this is offense and has their feeling hurt and flags this at least let others see it first.   

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hey John....it's going to get worse before it gets better...and I doubt it will  EVER get better! My PCP and I have had some serious discussions in the last few weeks and he agree's that people are going to really feel the pain in the coming year with health care costs. His practice has already started dealing with the high costs and changes being implemented on what is and whats not allowed for treatment. Like he said...he has no choice but to pass the costs to patients in order for him to keep his doors open. I pay a $25.00 "user fee" now for just walking in his door. NEVER paid that before. His cost per visit has gone up $65.00. Co-pays are to be paid at time of appt...no billing as before. Those who can't see what's coming down the pike have blinders on...we are ALL going to pay more and get less...it's just a fact. Those who can't pay will get it for free...those of us who DO pay will pay for them. It is what it is. It boggles my mind how anyone thinks this is all "ok". If someone flags your comment...shame on them! The truth is the truth. Hang in there buddy....Sue

(FNHL-2-3A-6/10) age 62

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue,

  Thanks for replying. It seems a post like this is almost talking about religion or politics. Nobody wants to touch it. Nobody wants to muddy the waters. They just want to lala along and believe the government is going to watch out there and take care of them. If they trust this government  and really think they are looking out for us and going to make life happy and prosperous, then maybe they should take a closer look at what they did to the American indian. History always repeats itself. John Kerry ( Presidential candidate) said it best when he said, "If you dangle a carrot if front of the American people they will follow it off a cliff." I really get ticked when I see where members post about  medical insurance and medicines being denied. This is our lifeline and its slowly, like the hour hands on a clock being taken away from us. We need the real health care that is out there. Some people like you and I have been battling this Lymphoma for nearly 3 years now. So many people are just starting out in their journey so whats going to be ahead for them in what type of care they are allowed. It bothers me for whats down the road as far as healthcare for all of us. What we all have here is a very expensive disease to treat. A bag of R cost about 1/4 the price of a new car. This new phony health care system is NOT going to let people keep getting this stuff. Several are being denied Neulasta, another expensive medication. 

  I have been getting co-pays lately when I go to the Drs.and I have 2 insurances. This is just the beginning. This phony health care will not truly kick in until January of next year. Some members may see this subject as something like talking about politics and religion and shouldn't be discussed here and then jump to the next post. Well they better see it as what it really is. The continuation and extension of our lives. You are not Choir members, you are victims.  Soapbox John   

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Re rituxan and other brand name drugs; there is an article in todays paper that the President and AMA is taking on drug companies that pay to stall generic drugs to the market.  Of course it's not a clear cut answer because the drug companies want to protect and recoup the billions of dollars it took to develop and patent their drug.  On the other hand it presents the consumer with steep pricing.  Just another medical ethics issue that needs to be sorted out.

Cathy

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  With all due respects whats the president doing involved with the AMA....Oh. I forgot it's another part of their total control of who gets what and when or if they get it at all. Sorry to say the journey fighting with the insurance companys is only beginning for so many just starting out. Too bad there is not a 3rd term for our dictator. Maybe he'll execute an executive order to make it a new law.  We are all in a World of SH#T !!!   John

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Well I guess the alternative is to let the drug companies potentially delay cost saving alternative generics to the market.  Damned if you do and damned if you don't!  Remember the debate on stem cell research?!   Regardless of who are legislators or Presidents are, you can find both good and bad in their decisions and stances.     Cathy 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Cathy,

 

 

No matter how we slice it,we are all in a lot of trouble here. The ones that need the expensive medical assistence like cancer pts. are going to get kicked by the way side. I am sure each and evey person on here has started to feel the effects of what is yet to come. Maybe I am being paranoid, but I can see this country slowly becoming a third world country. What we see happening in those other countries on the news will eventually be happening here. The leaders will continue to tell us things are looking better everyday. The sad part is a lot of knuckle heads will believe it. In the meantime we are searching for medical help that was plentiful just a few years ago. If I never had Lymphoma I would still feel the same way about what these politicians are doing to their own people. Remember all politicians get "FREE" gold card medical care for life.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network