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Progress report

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Hello to all and I hope this finds everyone in a peaceful spot. As many of you may remember I had Zevalin treatment for Follicilar NHL in April. I went for a follow up check yerterday 5-27-10. It looks as tough my blood work has rebounded and is now normal, so normal in fact that they were able to cancel my remaining 6 blood checks! MD explained that once they see the levels drop they know that the whole process peaked and then wait for the rebound. So apparently I am in the clear for now. I need to go back in 3 months for a CAT scan. My MD says he doesn't expect to find anything but wants it as a post treatment baseline. Then I don't go back for 6 months. I am apprehensive and really hoping for the best. I asked him how he thought I would do as far as length of time in remission and he said people are doing really really well especially in England. I told him I just can't move there right now. We laughed and he went on to clarify that their studies go back further then ours so they are able to get a better picture. So I will just stay here. I feel very blessed at this point and have all of my fingers crossed(very hard to type that way). I also asked him about the fatigue and he said it's not from any one thing that I had but rather all of the treatments, of which there were many, over the past year and 10 months.He added that I had a lot of different things but now I am done and my stamina will gradually return. So for everyone waiting or starting treatment or in the middle of treatment I can only say to hang in there because just when you think there is no end in sight it's there. My best to all. Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Thanks Mary for sharing all your good news. Take care and have a wonderful weekend.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Your welcome and thank you for your time. You have a good Holiday weekend too. Mary

britta
Posts: 107
Joined: Apr 2010

Mary,

This is wonderful news. We all rejoice with you. Thank you Lord for answered prayers.

Britta

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Hello Mary,
This is good news! Keep up the fight, treat your body right. God bless!
Stay Strong and Positive†

Don

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Thanks Don. It feels so good to be done and so far has been much easier then chemo. Your advice and info helped me a lot and please know how much I appreciated it. A little anxious now with not knowing what to expect. I hope nothing. After so much constant care it feels weird to be leaving all of that behind. Hope all is well with you and God bless you too. Mary

711tom
Posts: 44
Joined: Mar 2010

That is wonderful and so fast! Thanks for the update, I know the path i will take now!

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

I need to refresh my memory. Are you considering the Zevalin treatment? If so I would be happy to help in any way I can. It was a hard decision to make. Let me know and good luck.
Mary

711tom
Posts: 44
Joined: Mar 2010

My ONC was reluctant to treat with Z for some reason but Z seems like a natural treatment option to me. I think he thinks the cumulative effect of the three chemo sessions may have damaged by BM but at last test it ws only 15% involvement. He wants me to see the Dept Head of the BMT in July, but I am leaning toward the Z. I was dx in 93 had CHOP. Recurrence in 01 had TREANDA-R in 05 and then had R-CVP in 08. I have three visible tumors now but nothing that large or "pushing" on anything vital at the moment. I told him I want whatever it is to give me a durable remission and BMT was his answer. The things I have read about Z seem to offer the same durable remission, not without risk, but certainly, from what I have read people are getting great results! You seemed to have flown through the treatment with only 6 weeks before your counts stabalized, thats great! Anyway, I will probably see the BMT people in July and then decide but I am leaning hard towards Z. I wish you the best and I will try to stay in touch, thanks for your inspiration and I hope you have beaten this thing!

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

Tom, what type of nhl do you have? follicular,indolent,aggressive,etc. You probably said it somewhere, but being new to the site I do not know how to get around on it that well. john

yesyes2
Posts: 461
Joined: Jul 2009

Hi 711tom,

On the LLS board I just read about the use of Zevalin or Bexxar in combination with SCT. If you want check out www.nhlcyberfamily.org/treatments/novelsct.htm for further information. My lymphoma was aggressive so at this time I'm not a candidate for this type of treatment. I've read that for aggressive it's still in the clincal trials phase. And my Onc was worried because I had had prior radiation for breast cancer.
Anyway, a good question to ask the BMT docs when you see them.

Good luck. I will be thinking of you.
Leslie

711tom
Posts: 44
Joined: Mar 2010

Thanks for the info, I will look it up tonight. Thanks for the kind words and I will be thinking of you as well. John, I have indolent NHL Stage 4, dx in 1993.

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

Tom, thats exactly what I have.They did the wait and see thing on me for a couple of months. It has just reached the bone marrow. Now they said it is time for r-chop. It really has me worried and I am hoping for the best. I know everyone responds differently but is great to hear from someone that has held this thing off for so long. 17 years and counting. How old were you when you were diagnosed? I would still not know I had this if not for a routine cat scan for kidney stones. I am sure you have watched the progress thru the years for nhl. I am sure you are a world of information on this. Any info you can share would be greatly appreciated by all of us. Thanks, john

711tom
Posts: 44
Joined: Mar 2010

John best of luck with the CHOP treatment. I started it on 12/23/93 and ended in June 94. They did not have Ritaxun then but the rest is all the same. It was not a picnic but it was ultra effective. With Ritauxin it is even more effective. I had 8 years of complete remission and upon recurrence I went to the NCI in Bethesda, MD in 01 and they (7 ONCs) unanimously told me to "wait and watch". That lasted almost 4 years before I did a clinical trial for bendamustine (TREANDA).

Anyway, I wish you the best and know that while its no fun it really is effective. The worst was the Prednisone, I was at 100mg/day for 5 days following treatment. I ate like a horse and gained 22 lbs. The week of the treatment you went through a cycle of feeling kind of bad in different ways but by the end of the week you were back and then at the end of three weeks, right before your next blast, you were really ok. When I did R-CVP in 08, which is CHOP without Adriamycin, the Prednisone dose was only 60 mg/day and that was way better. So maybe they have cut that back for CHOP as well. I was really lucky in that my counts never dropped so i never had anemia and never had to miss a session. Played raquetball through that 6 months and was tired but probably due to the extra 22lbs, lol. The anti-nausea drugs are way better now too, I never felt sick when I did CVP in 08. Hang in there my friend and just know how fast 6 months goes by and before you know it its over.

Merry, thanks for your inspiration, I am going to meet the BMT people and have the BMB then. My last was a year ago and I had 15% involvement, I feel fine now but again I do have some visible tumors. Has anyone read anything about this compound, DCA? They are doing clinicals in Boston and Alberta now. Sounds like a miracle but the FDA has not approved for cancer yet, however it has been used on humans for over 30 years for metabollic diseases. I will try to stay in touch more frequently!! Hope and Love to you all.

711tom
Posts: 44
Joined: Mar 2010

Forgot to answer your question, I was 34 when DX. Ironically I was in the best shape of my life playing basketball 4 nights a week in 2 leagues. At Thanksgiving, my sister-in-law, a nurse noticed a lump in my neck, i was not symptomatic at all, from there is was biopsy and the cascade of drama that follows. It was a very scary time, but know that there is lots of light and life beyond the cancer and chemo!

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

Really appreciate the response. I read where they have made a lot of progress in the past few years with lymphoma. I know there are a lot worse cancers out there and I can not imagine what they are going through. My father had prostate ca. in 1995 that was in the late stages. That is how I actually got diagnosed. I went for annual prostate exam knowing it runs in the family. I was sent for routine cat scan to check kidneys and bladder and enlarged abdominal nodes were seen. They diagnosed follicular lymphoma in April of 2010. I read most people respond very well to chemo with ritaxamab. The newer drug you mentioned,DCA, I can't really find any info on it. What info do you have on it? I can bring it up to my onc. Thanks, John

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Yes now I remember your story. Good to hear from you. Make sure, as I know you will, to find out why your onc is reluctant to treat with Zevalin. I know in my case the treatment was offered because I was in remission. I also had to have a BMB prior to the treatment and was told if there was any bone marrow activity I would not be able to have it yet. I have been very lucky and thank you for your kind words and encouragement. Good luck with your decision and I wish you the best. Mary

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Yes now I remember your story. Good to hear from you. Make sure, as I know you will, to find out why your onc is reluctant to treat with Zevalin. I know in my case the treatment was offered because I was in remission. I also had to have a BMB prior to the treatment and was told if there was any bone marrow activity I would not be able to have it yet. I have been very lucky and thank you for your kind words and encouragement. Good luck with your decision and I wish you the best. Mary

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

Mary, What type of nhl do you have? I have follicular stage 4 and starting r-chop next week. When were you diagnosed? I am trying to get all the info that I can. Thanks, John

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

I was diagnosed with follicular nhl grade 1 stage 4a in July of 2008. At the time of diagnosis I had 50% bone marrow involvement. I had the R CHOP beginning last October and finished in March. CAT and PET scans showed a complete remission and I feel very fortunate and truly blessed for this. I almost am afraid to speak of remission for fear it will come back but hey that's what it is so why not celebrate it. The above postings are referring to a treatment I just finished that will hopefully prolong the remission, also called progression free survival, for a long time. Things can be different for everyone and our choices and options can vary but we are all trying to win the battle. This site is great and the people are wonderful and smart. I would first concern yourself with getting through the R CHOP and don't let me confuse you beyond that. Right now that is whats important for you. If I can help with any questions you have please ask. Good luck. Mary

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