2 vs. 4 RTX Infusions - Thoughts?

[aewaustin]

Oh and the only real side effect I had from RTX was crazy bad night sweats, so getting an extra pair of pj's on my bed just in case they come this round as well. Just info for those that are starting RTX.

[Sangye]

I get bad sweats the evening of each rtx treatment. I've found if I go straight to bed for a couple of hours when I get home, the sweats don't hit as bad. If I stay up and tough out the weakness, the sweats, chills and shuddering are awful.

[me2]

Wow, finally able to get back on the site. I don't see others complaining so it must be just me and my computer with issues.

I'm so glad to see lots of discussion going on on this subject.

But I think I need to to back up to Sangyes question about her being misunderstood. I think I may be the leader of the misunderstanding.
Hi Sangye,
Why aren't there emoticons on this site you could use to club me over the head? Oh well, its not a perfect world.
I'm sorry I read your meaning wrong. Let me show you my thought process - flawed though it may be.

aewaustin asked for ideas about different Rituxan protocols and you replied "Anna, this is not something you should be deciding on your own (or with input from the group). Your doctor should be deciding this based on research and your unique case. "

This sounded to me like you were saying she should not decided this on her own or seek advice from the group but that her doctor should be deciding. The phrase “your doctor should be deciding this” is what lead me in that direction.

My point was that research is inconclusive and ongoing at this point and that decisions should ULTIMATELY be made by the patient. And for me ‘input from the group’ helps me to decide. (Like finding out from aewaustin what Dr Langford thinks about 2 vs 4. She has a different opinion from my doc. Now it is up to ME to decide what to push for)
I responded to what I thought you were saying in this specific place and not to what I've seen to be your approach in the past. I appologize. I could have done better in my response, but don't always have the time.
I hope you will give me further opportunities to flounder around on this subject and others and correct me when I misrepresent what you meant. I'm just a carpenter. I'm not a doctor. I'm not a writer. I'm not a professional of any kind. I'm just a guy.
I want to be part of the dialogue that can help myself and others to a better understanding of treatment and living with this disease.
Also I responded to this question because it seems to me it is a subject (number of Rituxan infusions) that is still being decided in the medical community and in individual case – all the more reason for the patient to be heavily involved. Not just for our own good treatment but to further the knowledge of how the different treatment levels are actually working out.

I have not seen anyone left to decide for themselves as you pointed out , but you have a LOT more experience with this and that possibility slipped by me. Especially since in my own case I have to fight to have input with my current doc. My advice to myself is DON"T let your doctor decide.

Another factor is that I know many here have world class doctors on the cutting edge of WG treatment and it is relatively safe to just 'let them decide' . Others of us in the hinterlands are behooved to try and be more informed than our doctor (not too hard in some cases) and make sure we are getting appropriate treatment - or at least the treatment we would want if fully informed.

Thanks aewastin for your information. I'm going to request that my doc talk to Dr Langford. I saw Dr Langford about a year ago because I didn't trust the decisions of my docs and I wanted the best doc I could find. I wish I had Dr Langford as my regular doc so I wouldn't have to be so involved in my medical decisions. Its been a terrible battle for over ten years now and I'm tired. Maybe its starting to show.

[Al]

Good post, Kirk. You raise several important issues. Especially, it is truly hard to know the best way to proceed, particularly if the medical community has nothing better to say.

Al

[pberggren1]

I couldn't log on this morning for a bit.

[me2]

Ah, I'm in good company then Phil. I'll quit complaining for at least a week then.

[Kami]

I still have problems logging on, took me several tries tonight.
I am not a very eloquent speaker either and I have to read and then read again and then once again to make sure my brain knows what I am reading. Sometimes I think reading is different than just talking to each other, things are interperted differently. Its good we can talk it out!! Have a good weekend everyone!!

[drz]

Sometimes doctor do leave it completely up to the patients to decide when there is no consensus in the medical community or research to suggest which option might be better. My wife was taking RTX maintenance every six months for a couple years after her initial four dosages to treat her lympoma which Mayo recommended. She did not like the side effects she experienced although they were no way as severe as what Sangye reports. In discussing her treatment with the doctor he pointed out there was no research suggesting the six month maintenance protocol did any better than waiting till evaluation suggested an increase in cancer activity and then providing more treatment.

He said it was up to her to decide which option she wanted. She went to the wait and see and now after 2 and half years of waiting is resuming the RTX treatment. It will be two sessions with the addition of radioactive isotopes to help RTX deplete the bad cells. This procedure was used for years in Europe long before it was allowed in the USA by the FDA. She wishes she could have had this initially since it has created remissions for some patients of 10-15 years in Europe while other treatments used in USA only offered remissions of a few years at best.

[Meredith]

I had 4 infusions end of April 2011 - still doing good. I have had some aches and pains recently but not enougyh to stop me. I am only on vitamins, nexium and bactrium. Have started walking 1 mile a day on the treadmill. Can't complain. Only thing I have noticed was that my face looks swollen -

[Meredith]

Also meant to say that the doctor told me it would be 4 treatments next time if I have to have it again.