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Anonymous user (not verified)

Hi all--

I was recently diagnosed and undergoing R-CHOP treatment. So far, it has really been quite a roller coaster.. the chemo is kicking my butt. I hate it.. but I digress..

Recently, I had my "mid-treatment" PET scan before my fifth R-CHOP. While the mass has gotten smaller, there is still activity. It went from a big patch to two smaller lit up areas. The doctor seemed quick to discuss stem cell transplants in case the post treatment scan still lights up... needless to say it's a bit worrisome.

I've looked up-down-left-right online to find some answers or experiences of others in this boat. I found this site, so I thought I'd ask for some opinions..

Do most find their mid-treatment scans completely clean? My doctor is very sweet and kind, so I often wonder if he's keeping things positive for me! I was a bit surprised that he was already talking about where he would send me if I needed a stem cell transplant. I guess he's just preparing me for the worst!

-Nathan

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

Nathan,
Welcome and so glad you found this site. There are so many out there that do not know of this site and are still going it alone. You will never be alone here. Believe it or not this is only a drop in the bucket of people suffering from this disease. Just wish they all would visit us. There is a wealth of information here. Stay away from those websites. They will scare you to death. They are stats and outdated. I have follicular NHL. My chemo was R-CVP. At my mid point my tumors were shrunk more than 1/2. Never discussed a SCT. I am now in remission. It would be easier if you would go to your "About Me" page and explain the type of Lymphoma,stage and grade you have. There are so many types out there.It gives us something to refer too instead of asking you to repeat .You will be getting plenty of responses from others as time goes on. I guess discussing SCT is not a bad idea,but it sounds like you are well on your way to remission at this point. Just never really know. John

hiccup (not verified)

I updated my "About Me" page with a bit more information. Thanks for the tip! You're sure right-- you never really know. The scan results add to confusion somewhat.

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hi Nathan and welcome to the group. I'm sorry you have to be here and
especially at such a young age (your twenties). You'll find wonderfully
supportive and caring folks here.

I too had Diffuse Large B Cell lymphoma (stage 2) - primarily in my
upper small intestine and mesentery area. My treatment wsa R-EPOCH which
is very similar to R-CHOP. My scans started showing no activity I think after
the 4th cycle (of six) but I honestly don't recall.

I think you're doctor is just covering the bases when he discusses SCT.
I'm glad the masses are shrinking and hope they dwindle to nothing
by the time you complete treatment. R-CHOP is usually given in 6-8 cycles I think.
Where are you in treatment and how many cycles? Point is you are responding to
treatment and that leads to remission :).

Please know you are not alone here and DLBCL is very treatable and even curable!
So, there's lots of hope. Next month, I will have been in remission for a year.

Others will chime in soon. Please feel free to share here, ask questions, etc.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

hiccup (not verified)

Hi Jim,

Thanks for giving me a little insight on how things worked for you. My doc has prescribed R-CHOP-21 for eight cycles, and he showed no interest in cutting it to six. However, I think I can make it.

I'm on cycle five right now, and I had my last infusion about eight days ago. I'm celebrating today as my first day without a lot of nausea.. that has been one of the big issues I have with chemo. Bleh.

I'm glad that you got through to remission with chemo only.. I hope I can do the same! Though, I guess the stem cell transplant process doesn't seem that terrible if a cure is possible!

:)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

hiccup,

I agree with Jim that the doc is mostly likely bracing for any contingency.

There is not any "usual" in cancer treatment, but many, many people with Stage III or higher seem to me to NOT be to complete remission by infusion 4. I was NOT, but the doc was estatic about how well things were going for me. I recall that my tumors were down by about 70% at that time. Actually, I have never read of a person Stage III or IV being in CR by the fourth treatment, but I am sure we have some members who achieved that goal. It is NOT the norm, so do not fret over it. I did 12 rounds of r-abvd for HL, and was in CR by the end.

You may have what is called "bulky disease," which is a little harder to eradicate.
I would not push for fewer cycles of treatment. When you hit CR, continuing for a few cycles is intended to kill undetectable cells remaining in the body, so long term, this is a real benefit. It is very worth the extra month or so on the drugs.

I wish you well. What I would say to the doc is that if treatment short of SCT will do the job, I do not want the SCT. It will save some hospital discomfort, and about a million dollars. But that is my layman's view only.

max

.

hiccup (not verified)

Hey Max--

You're right, I do have bulky disease, so I'm guessing that's why the treatment is so intense. I am sure ready for it to be over.. it gets worse with each infusion! I think I just had high hopes that the PET scan would somehow magically release me from treatment. Darn.

Thanks for the well wishes.. and I agree, I think I'd rather avoid an SCT all together if possible! I have my fingers crossed for that one.

Nathan

KatMat
Posts: 62
Joined: Jul 2012

Hi Nathan,
My husband's PET scan after 3 rounds of R-Chop for large diffuse b-cell was not clean either. He tolerated treatment well and we thought things were going to be better than the results ultimately showed. He had 6 rounds of R-Chop and the PET scan 5 weeks after the 6th cycle showed residual disease which did not lift our spirits much. Now he is receiving R-ICE treatments and doing very well.

He is scheduled to undergo an auto transplant in the next few months since his disease is so aggressive.

I wish you the best of luck and hope your treatments go well.

Stay positive!

Katie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

hiccup,

Most folks here would agree that the effects of chemo are cumulative, and tend to get worse during the later cycles. That was definitely my experience.

Wishing you luck. Write about anything, any time.

max

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Nathan,
I'm a little late welcoming you to the group, but when I have my 18 mo old granddaughter here(babysit 3 days a week), I have very little time to spend on the computer. :) I did not reach complete remission after finishing all 6 rounds of my first line chemo-(CVP-R), but was considered stable. My tumors..groin, neck and abdomen shrank to mm size by the end of chemo, except for one tumor under my clavical bone...it stayed the same, but never grew any bigger. I will finish my Rituxan maint in February and get a follow up scan in March, so God willing, I will have reached a full remission by then. All I ever worry about is finding "new" lumps...so far so good, none have shown up. Your age is definetely on your side and with your sub type of Lymphoma, I have read where it can actually be cured, where as my sub type cannot be. I have Follicular NHL-grade2-stage3-typeA and I'll be 62 at the end of the month. Please let us know how you are doing and know we are always here for you. Take care and best wishes...Sue (Yakima Washington)

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Nathan,
Just wanted to welcome you to the group, I have a different type of NHL and I'm also doing a different type if treatment. So far I have had two rounds of Rituxan which consists of Once a week for four weeks every six months, had one in Feb and just finished my second in Aug. I haven't reached remission yet, will see the doc next week to see how things are doing. I'm going to have more test done plus another BMB in Oct (no fun)!
I wish you only the best and hopefully by the end of all the treatments you will have reached remission!

Sincerely,
Liz

hiccup (not verified)

Oh boy.. another bone marrow biopsy? Yikes... I hadn't even thought of that happening again. Cancer truly is a joy!

I hope we can all reach remission! I'm starting to discover cancer is a little more complex than I thought.. even if I do hit remission, boy is my life upside-down right now!

:)

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Nathan

I am a little late in welcoming you to our wonderful group. But, better late than not at all.

You have found a truly great group og folks who will be here for you and answer any questions you may have. Please feel free to ask anything at all.

I have been going through a tough time right now, so I sometimes miss reading a few posts. I do try to read all of them and when energy allows, I try to respond to most of them.

Glad you found us and welcome..

Lisha

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Hi Nathan--

I am later still in welcoming you to this wonderful support group for the various types of NHL.

I do not have the same type as you--though, aggressive for your--it is curable. Plan for the stem cell, and if you don't need it it's no problem; but if you do, then you have prepared.

As everyone above has stated; remission doesn't show frequently during the interim treatments. Hope you reach remission by the end of your cycles.

I haven't been on the site for awhile. But it is a great source of comfort, support, encouragement and information sharing. Susan

hiccup (not verified)

And I totally agree about being prepared for the worst, and celebrating when you get good news :)

Being sick is a lot of work.. I kind of feel that I have a million things that are underway, but I'm waiting on this or that to be signed or arrive via mail. Between naps I have been preparing things for what may lie ahead. I'm young and have very few assets at all.. but I hope to safeguard what little I have left in case I do have to have the SCT.

At least I don't have kids to worry about.. that's a good thing! I can see the humor, however, in being a guy trying to financially plan for my cats' survival in the event of my death.

:D

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Keep and use that sense of humor Nathan! It will be your ally :).

Thanks for making me smile.

Jim

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Yes, smiles and laughter---Definitely good!!! (even though hard to find sometimes)

Love to smile--

Susan

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