Its back again!

trixilator · New User Joined: 11 Aug 2005 Posts: 4 Location: Kent UK

After 5 years in remission my wife's NHL has returned with a vengeance.
She is now 80 and is scheduled for another 6 cycles of CHOP-R. The previous time she ended up in isolation with neutropenea on 3 occasions during the cycle, as well as a DVT in her right leg. 8 months ago she was diagnosed by her GP with hight blood pressur and when her ankle started swelling this was put down to a blood pressure odema. As the leg continued to swell we had to press for a second opinion and was given an ultra sound which was interpreted by the GP as a DVT. Warfarin was prescribed with all the attendant anti-coagulant clinic visits. On line research confirmed that all her symptoms could well be a lymphodoema and we had this confirmed by her oncologist on her 12 monthly visit. This misdiagnosis by her doctor just confirms the lack of awareness of lymphodoema - we could have been receiving correct treatment 8 months ago instead of now when she has a leg 56% larger than the other with the swelling into her groin where the latest tumour was revealed by the CT scan! Sorry to go on - my question is - is there anyone else out there who has had to undergo CHOP-R again, if so, what was the treatment like?

ChemoMan · Posted: Mon Aug 10, 2009 4:35 pm Post subject: Re: Its back again!

Hi trixilator

So sorry to hear that your wifes lymphoma has returned. This is going to be a tough fight for both of you.
Have you had the lymphoma staged ? That is pretty important to know. Also wondering if your wife had R CHOP before or just CHOP or something else. My understanding was that Doxorubicin ( the H in CHOP) could not be given again due to the cardio toxic effects and the dose given during chop was a lifetime maximum dose . The maximum cumulative dose which can be safely given is 550 mg/m², after this the risk of serious side effects or death are too great to consider In any event she should have a gated blood pool done to check wether she can take it. R CVP would be a safer option I would think, but this is something you need to talk over with the doctor. Dont worry too much about the lymphodema, I had that in my arm and it resolved pretty quickly with the chemo.
In Australia the option used for relapse is usually DHAP plus autologus stem cells, at least it is in my state, and it is used with a fair degree of success, and this is also something your doctor could consider.
Please quiz your doctor on the use of doxorubicin before you proceed.

Good luck your wife and yourself are very much in my thoughts.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

trixilator · New User Joined: 11 Aug 2005 Posts: 4 Location: Kent UK

Thanks chemoman for prompt reply. Original diagnosis was Stage 4 follicular NHL. Oncologist said CHOP-R again but without "the red one" which was the "most toxic" so presumably refers to what you are talking about. So pleased you confirmed the chemo would also relieve the lymphodoema in her leg - we are, today in fact, about to have her first treatment at a local lymphodoema clinic - compression HLD etc so hope to obtain some relief from that.
Due to attend for blood tests this week, then next week insertion of underskin canula in her chest then commencement of chemo, so we'll have opportunity to discuss the doxorubicin thing. From various on-line sources I have impression Australia is much more "lymphodoema aware" than over here. Your kind thoughts very much appreciated and heartily reciprocated.

ChemoMan · Posted: Tue Aug 11, 2009 3:30 am Post subject: Re: Its back again!

Hi trixilator

Yes the doxorubicin is the red one. The lymphodema should resolve within a week and its the cortisone that does that. Dont worry too much about the stage 4 that is very common with FHL due to its indolent nature. I hope all goes well and you have positive news to post very soon.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Don · Posted: Fri Aug 14, 2009 6:15 am Post subject: Just to Chime In

CHOP without the "red" one would be CVP...I am doing that now and have not had too many problems with it.

I had been discussing CHOP vs CVP with my oncologist and he said that, yes there are problems with doxorubicin and the heart, but hinted that the problems stem with the doses that are given. He was just selected as a "TopDoc" in the Northern Virginia area, if that means anything...I had done research and caught him on a few things he never knew about,

Anyway, this is something you can talk to him about.

Best of luck...Don

PS...I hope I can get a remission lasting 5 years!!!!
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

andrea23 · New User Joined: 26 Aug 2009 Posts: 1

[b]hi im andrea from northern ireland...23 years old with a 4 year old daughter... well i got diagnosed with diffuse large b cell (high grade) non-hodgkins lymphoma in feb 08....i had 6 cycles of R-CHOP....i then had a pet scan...apparently i was cancer free! so went home and had a few drinks 2 celebrate as u do but a few weeks later i started havin night sweats again...i went bk 2 my consultant and told her my concerns...she told me it was all in my head and tht i was jus worryin 2 much! so i went home and tried 2 tel myself not 2 worry but a few days after tht i found an enlarged lymph node in my neck...i went back 2 the hospital 2 c my consultant...she arranged 4 me 2 hav it taken out and tested! tests came bk which were very strange...not only was i right about the cancer...the tests on tht lymph node came back as hodgkins lymphoma...every1 was baffled includin the doc...it seemed as tho they didnt no wot 2 do...i was very scared...i thought my time was up and there was nothin they could do 4 me!! my consultant went out of the room 2 talk 2 another doc...she came bk in and said tht i was gettin started on a regime called E-SHAP followed by a stem cell transplant (with my own cells) i had 4 cycles of E-SHAP which was very rough...2 get tht regime i had 2 b in hospital as the chemo was 4 five days 24 hours a day...i had 4 cycles of this then in may this year i went 4 my stem cell transplant...iam now 9 weeks post transplant...stil not eatin great either...i was 6 stone wen i got out of hospital and havent really put much weight on but the doc told me it takes quite a while 2 recover....thanx 4 takin time 2 read my story and good luck 2 u all...

love andrea

x x x[/b]

trixilator · New User Joined: 11 Aug 2005 Posts: 4 Location: Kent UK

What a sad story, Andrea - so sorry to hear of your experience. for a 23year old to go through what you're facing is tragic! You didnt mention whether or not you have family support - a partner or parents. I sincerely hope you have someone to share your burden and help you - God bless you, my dear - I hope you can soon post better news.

ChemoMan · Posted: Wed Aug 26, 2009 4:34 pm Post subject: Re: Its back again!

Hi andrea23

So sorry to read your story. You sound pretty tough. the ESHAP is a rigorous treatment, I cannot even imagine going through it so soon after R CHOP. I really hope you start feeling better soon and I wish you many more trips around the Sun.If you feel up to it keep us posted. Good luck you are very much on my mind.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

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