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Reoccurring Non Hodgkins

Pnktopaz10
Posts: 56
Joined: Oct 2008

Today was a stressful day. In July, 2008 I was diagnosed with Non Hodgkins Lymphoma. I successfully completed R-CHOP and radiation. I had been in remission almost 4 years. Then the lymphoma returned~this time in my back. I have a PET scan tomorrow and the will start chemo. After chemo a stem cell transplant. Has anyone been through a second round of this disease and had a stem cell transplant?

ThisisLife's picture
ThisisLife
Posts: 98
Joined: Jul 2012

Hi,
Sorry to hear that your had a recurrence after that much time. Good luck with your treatment. I'm afraid I'm able to give you any advice or feedback as I'm on my first go round. Just wanted to say good luck.

Shar

jimwins's picture
jimwins
Posts: 2038
Joined: Aug 2011

Hi Pink Topaz,

Sorry to hear about the recurrence. I finished chemo about a year ago
(R-EPOCH) and luckily so far, still in remission. There are several on this
board who have had SCT or are going through it now. I'm sure some of them
will chime in soon. You are not alone and you know you're welcome here
any time.

Sending you hugs and positive energy,

Jim

allmost60's picture
allmost60
Posts: 3168
Joined: Jul 2010

Hi,
I have not relapsed yet..(knock on wood)...but wanted to welcome you to the group. I'm so sorry you have to go through this again. Hopefully some of our other members will tell you their experience with relapse and SCT procedure...we have a few going through it right now. Let us know if we can help, and good luck. Best wishes...Sue
(Follicular NHL-stage3-grade2-typeA-Dx June 2010-age 61)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

Sorry about the recurrence. I have been clean 3 years, and I know this is a fear everyone lives with.

There are some second-line therapies for some lymphomas that do not require SCT. But, your doc can best explain these options to you.

I hope it works well,

max

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

So sorry to hear about your relapse, I have had two rounds with cancer, but my first cancer was head and neck, the second was Non Hodgkin's Lymphoma. As Jim said there are a lot of success stories here with stem cell..... How did they find it in your back? Vinny

Pnktopaz10
Posts: 56
Joined: Oct 2008

Hi Vinny~ thank you for your kind words. I think that it was rather a fluke that it was found at all. I was out walking and stumbled over a crack in the sidewalk and strained my back. A CT scan was completed and my doc had a specialist read it. If my doc had not been so good it probably would not have been found. I go for the PET scan today and then start chemo, probably next week.
How are you doing? are you doing chemo? Pnktopaz

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

Hi Pnktopaz, your story sounds like mine in a way. I just wasn't feeling right, and my oncologist on my "yearly visit" ordered a PET scan. I ended up getting the phone call that I had NHL with bone involvement stage 4. I finished eight cycles of r-chop last August, I still have a SUV 2.4 in my hip, but my Doc feels it's treatment related. So when I see a story like yours, it saddens me.... good luck with your PET scan and Stay strong, and keep us posted.... Vinny

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I am recurrence queen both with reg chemo and sct. Hope you get much better results than me though! At least you know the ropes and won't be so blindsided as the first time.

Pnktopaz10
Posts: 56
Joined: Oct 2008

Hi dixie girl
Hope that you are doing ok. Yes I know the ropes and that is the good thing. Having the cancer come back is not a good thing...but I have a wonderful doctor so early next week I will find out exactly what is going to happen. My PET scan confirmed the cancer... I was sincerely hoping that it would not. LOL>

Pnktopaz10
Posts: 56
Joined: Oct 2008

Vinny thank you so much for response. I do not know why it is that it is good to know that others have or are going through similar challenges. R-Chop was not a favorite of mine in the chemo dept. it was the steroids that got to me. What is the next step for you? Pnktopaz

Pnktopaz10
Posts: 56
Joined: Oct 2008

Thank you everyone who responded to my post. It is so nice to know that there are caring people out there that are kind and supportive. 4 years ago this website was a godsend for me. It looks like it has not changed a bit. thank you all dear people

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Really sorry to hear of your relapse, this is truly a worst nightmare come true!
Wishing you only the best and hopefully you will get rid of it fast. I was just wondering the subtype of your NHL? Well take care and please keep us posted on what the doc recommends. Positive thoughts your way.

Sincerely,
Liz

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

Hi, sorry about your PET scan, but they found it early.... R-CHOP was better then the cisplaten treatments I had, but it still knock me down!, I hated the steroids too!!! I'm trying to ignore the shoulder and the spot on my hip, I have faith in my Doctor that if she feels every things good, I'm cool with that....... let us know what treatment you decide on. Keep fighting....... Vinny

NANCYL1
Posts: 244
Joined: Jun 2012

Hello:

I have B Cell Lymphoma and am having Rituxin for two years. Four sets of infusions every six months. Been through one set. Next, the end of November. I am very new to this dreadful disease and have not much knowledge of it.

Just wanted to wish you well.

Nancy

anliperez915's picture
anliperez915
Posts: 755
Joined: Sep 2011

Hi Nancy,
I hope you're feeling better after finishing your Rituxan treatment (I think its been a couple of months for you)? Did you already have some scans done to see where you stand? I just finished my second round in Aug and to tell you the truth, I feel a little worse than when I started the treatment. Next week I go to my Onc to start the testing again (oh the joy)! Sorry that I hadn't responded to your post before but for some reason or another I would get sidetracked. Take care and sending you positive thoughts

Sincerely,
Liz

NANCYL1
Posts: 244
Joined: Jun 2012

Hello Liz:

Thanks for your note.

I was diagnosed with B Cell Lymphoma this past Spring. My doctor says it is "mild," and started me on Rituxin in May. This will prevent the Lymphoma from advancing and requiring stronger chemo. (I hope) Apparently, it can be controlled.

I will have infusions every six months for another 1 1/2 years, a set of four each time, four weeks in a row. Have had a CT-Scan and a Pet Scan. Saw the Onc. yesterday. Have another visit in four weeks, and then another set of four infusions starting towards the end of November 2012. Feel somewhat better. Blood test shows some improvement.

Hope your tests turn out well: A+ (I know what you mean by "oh the joy")

Hope you start feeling better soon.

Thanks again for your positive thoughts. I am sending you some also.

Nancy

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Just wanted to add some more hugs, thoughts and prayers your way---has to be a bummer for you----pray that the treatments this time will knock it out!!! (way out of the park!) forever!

Since I'm just a year out from initial diagnosis, and still i n maintenance, with partial response, remission thus far, I can't relate exactly to what you are experiencing---however, with compassion for your struggles, fears, other emotions that we experience dealing with this disease---take good care of yourself, laugh when you can, relax when you can, and thanks to all who give support, encouragement and love on this site!!! YAY-

LOL, Prayers and lots of hugs your way-
Susan

Pnktopaz10
Posts: 56
Joined: Oct 2008

thank you for your kind words. I hope that you are doing well. Your positive attitude is an inspiration and I will follow your advice. Please stay in touch! LOL Prayers and hugs to you also!
Pnktopaz aka Pat

DennisR
Posts: 148
Joined: Sep 2009

I had a recurrance of NHL after 8 years of remission. After I was diagnosed I had 6 rounds of Chemo, not CHOP, but something differen. Following that I went to Seattle where they collected my own stem cells at Fred Hutchinson Cancer Center, then I had some more Chemo and full body Radiation followed by a stem cell transplant. They told me that NHL is a good cancer to have as far as a transplant is concerned, it is a very effective and possibly curative for the long term. That was about 4 years ago and so far, I'm still NSD and feeling great.

po18guy
Posts: 241
Joined: Nov 2011

Although an auto SCT is not curative for me, and there is no donor for an allo SCT, Fred Hutchinson (Seattle Cancer Care Alliance) would be my facility of choice for an SCT. The mini-allo was pioneered there, and they do an awful lot of successful transplants there. Of course, I'm biased simply because they have saved my life twice now.

Madrusia
Posts: 3
Joined: Sep 2012

I m sorry to hear that, but hopefully chemo and BMT will do the job.
What kind of non-Hodgkin lymphoma is it?
Madrusia

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