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COMPLETE REMISSION - PRAISE THE LORD!

britta
Posts: 107
Joined: Apr 2010

Hi Everyone,

Great news, had a CT last week and after six R-CVP treatments I am in CR! I am so thankful and can hardly believe it. However, I will have to do some further treatments to try and prolong remission. I had pretty much decided to do the Zevalin, when my doctor threw me a curve and said there was a new study published a couple of weeks ago on Rituxin Maintenance. There is now evidence that the PFS is comparable to that of Zevalin (at least I believe that's what I heard, need to clarify with him). He is okay with either choice, now I have to make a decision (oh..so hard). The RM is two years plus nine months recovery time, or Zevalin one week plus nine months recovery. Praying for guidance and hope some wisdom comes my way pretty soon as I only have another week to decide.

Meanwhile, I pray for all of us, for remission and PFS for many years to come. Thanks for being here. It helps a lot.

Britta

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

Thats great!!!! Do you have follicular? Thats what I have. Stage 4. I go for my 2nd round Tuesday,R-cvp. Do not know to much about zevalin, but have heard of it. What do you mean by recovery time? Get all the info you can and let us know. Again, congrats on the CR. John

britta
Posts: 107
Joined: Apr 2010

Hi again John,

Yes, I HAD follicular, stage 4, grade 1, doc says I don't have cancer anymore. That's taking a while to sink in, and I'm having to remind myself everyday. As for the recovery time, he meant for your blood work and stamina, etc. to return to normal. Mary has had the Zevalin and I hope to chat with her soon. Thanks for writing John, you have had two treatments, right?

Britta

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

Have my second round today of r-cvp. Keep us up on the zevalin. I am sure you had a scan midway thru treatments,right? Just wondering what that showed at that point. I don't understand some of the abbreviations like PFS? John
Just wondering if you lost most of your hair as mine is starting to fall out pretty good now after 3 weeks out from my 1st treatment.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Did you shave your head yet? still waiting on mine to fall out.......

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

John, It is hard to keep up with all the abbreviations and don't feel too bad about that. Until you reach all the different stages of this journey you haven't heard them yet. After you achieve CR they move forward and think of the best ways to keep you there. Since there is,as of yet,no cure for Lymphoma they call it Progression free survival or PFS. They are working very hard for us to make it so we can not only survive but survive without having nearly constant treatment. I was told that they are dangerously close to being able to use the "cure" word with some of these treatments. We just may see that soon. PTL is completely non medical but equally restorative for many, Praise The Lord!! Best to you. Mary

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

MARY AND BRITTA, I JUST GOT THRU WITH MY 2ND TREATMENT TODAY. ALL WENT WELL. Just a little tired from the benedryl. Go in tomorrow for the neulastra shot. My blood counts were really high for a person getting chemo according to my onc. nurse. Just wondering if they are close to using the word ''cure'' with our type of lymphoma yet. Please let me know. I used to scan the computer for these break thrus , but find a lot of articles are outdated. I would really like to see cure used for all cancers and someday they will. I have learned there is a cancer for every part of the body and it is a different type of cell for each part. John

Richsterr
Posts: 36
Joined: Aug 2010

I have the same . How old are you? What about relapse? Thats the problem now.

Richard

britta
Posts: 107
Joined: Apr 2010

That's great news, congradulations!!! I'm 69, and decided to take the Zevalin. I was given three options, do nothing, Rituxan Maintenance or Zevalin. I had the Zevalin in July, and am staring to feel extremely tired and ache all over. I imagnine my blood counts are starting to drop right now. I will be seeing the doctor and have my blood checked at the end of the month. Couple people on here have had a pretty easy time with the Zevalin, and one is still not feeling well after 8 months. All these decisions are so hard, but you just have to make them, and not look back. What are you thinking about doing, Richard??

There are a lot of people on here who can be of help. It's a wonderful sight and you can openly talk to others who have gone through the same thing.

Britta

britta
Posts: 107
Joined: Apr 2010

That's great news, congradulations!!! I'm 69, and decided to take the Zevalin. I was given three options, do nothing, Rituxan Maintenance or Zevalin. I had the Zevalin in July, and am staring to feel extremely tired and ache all over. I imagnine my blood counts are starting to drop right now. I will be seeing the doctor and have my blood checked at the end of the month. Couple people on here have had a pretty easy time with the Zevalin, and one is still not feeling well after 8 months. All these decisions are so hard, but you just have to make them, and not look back. What are you thinking about doing, Richard??

There are a lot of people on here who can be of help. It's a wonderful sight and you can openly talk to others who have gone through the same thing.

Britta

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

You posted in one of your post that you wanted me to E-mail you. You even left your address and now I can't find it. Chemo brain is wonderful. If you want to write me back and leave your address again I will be sure to get back to you right away. More than likely someone will find it and send it to me before you do. If they do tell me where it is, I can't find it for crap. Thanks, John

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Great great news!!!!!!!!!!!!!!! maybe you can get a couple opinions on which maitance program would be right for you.... Vinny

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

Oh Britta I am so happy for you. It's such a huge thing that it's hard to accept and take in. I remember very well and I also remember having to make the decision about Rituxan maintenance versus Zevalin. It was very difficult and now after reading your post it sounds like they already have more information. That is slightly different from what I was told but since we are being treated at the same place I can't say it's because of that. It was great to hear from you. I've been wondering how things were going. Let me know which you decide on or if I can help in any way. Prayers and all the best. Mary

britta
Posts: 107
Joined: Apr 2010

Sorry for the abbreviations, I just learned them myself, so why I didn't spell it out I don't know. I had minimal hair loss, although it is still coming out and it's about 7 weeks since my last chemo. They told me I would not lose my hair before I started, just would thin. Believe Mary said it takes about 8 weeks for the chemo to clear your system. Hope your chemo goes well today, and you don't have too many side effects.

Britta

britta
Posts: 107
Joined: Apr 2010

Mary, thank you for the sweet words and the support we all receive from you. You are a real inspiration to me. I do have some questions to ask you again and will write you later.

britta
Posts: 107
Joined: Apr 2010

Mary,
If you feel up to it and have time, could you give me a call?

britta

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

I would be happy to. Hopefully You emailed me your number. I will check and if not I'll email you mine. Take care and talk with you soon. Mary

Hoppy23
Posts: 26
Joined: Jul 2010

Hello, I have just registered and wanted to congratulate you on my first reply.

My husband is the one with Follicular NHL, stage 4, grade one. Just like you I think. His entire lymphatic system plus spleen plus bone marrow were affected. his oncologist opted to start him on R-CHOP and he has completed 6 cycles so far, with 3 more to come. He had a CT scan after his 4th cycle, which showed the enlarged lymph nodes have shrunk a bit but are still enlarged. His spleen has only improved half a centimeter.

He is going next week for a PET scan to see how things progressed. When I saw your title, I had tears in my eyes, like this was a sign from God that my dear husband will be in CR too very soon I hope. I pray for every single person with NHL every night. I think you guys are all so strong and tough to be going through all that and yet find time to help one another and encourage one another :-)

My husband's oncologist wants him to have the Rituxan maintenance for 2 years after he finishes his 9 R-CHOP cycles (we asked about the Zevalin, and she simply said we will NOT be able to afford it). We are not in the United states, and hubby's medical insurance has already maxed out and his company is paying the extra cycles for him as a favor for now and will discuss payment methods after he has finished his treatments.

He's doing OK I think except for all the harsh side effects. he's 44 but the chemo left him feeling like he's 70 sometimes.

Ugh...this got longer than it should have been. Anyways, I only wanted to tell you how happy I am for you and may you stay in CR for 500 more years :-)

britta
Posts: 107
Joined: Apr 2010

Hello Hoppy,
Thank you for your very kind message. Funny thing is I just responded to your "no fruit" message and then saw your message to me. I am so sorry about your husband, it is tough, but he will get through it. Yes, I pray for everyone on this site and all those with cancer EVERYDAY. Keep the faith, and trust in the Lord, he is in control. My first husband lived with cancer for 27 years, only the last three were difficult. We have outstanding drugs now and they are doing a much better job. Don't worry about not getting the Zevalin, there is a new study published in June 2010 showing really good progression free survival with Rituxin Maintenance. I have asked my doctor to e-mail me a copy of it, and will let everyone know what it says (if I can understand it)LOL

What country do you live in Hoppy? It's so strange, talking to people from all over the world, but in the same circumstances. We all need each other and this site is wonderful. So many caring people, ready to lend a hand of frienship.

Blessing to you as you walk through this with your husband. Please keep in touch and let us know how the petscan goes.

Britta

Hoppy23
Posts: 26
Joined: Jul 2010

Hi Britta. We are currently in Egypt trying to relocate to Canada. But we need to finish the Rituxan maintenance here before travelling to Canada, because no insurance would pay for that in the middle of tratment I think.

I think crisis make people from all over the world unite better than anything else. It should not be that way, but I guess this is how things work.

I'll update you with the PET scan results as soon as we get them. Praying so hard they are CLEAR :-)

TheMWord's picture
TheMWord
Posts: 23
Joined: Jun 2010

I am so happy for you!!!!!!!!! Really is the greatest news you can get, isn't it?

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