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Unknown
Unknown
in Lymphoma (Hodgkin and Non-Hodgkin) #1
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

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    SCT
    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 They are stats and outdated.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
  • jimwins
    jimwins Member Posts: 2,107
    #3
    Welcome Nathan
    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. :)
  • Unknown
    Unknown
    #4
    COBRA666 said:

    SCT
    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

    thanks!
    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.
  • Unknown
    Unknown
    #5
    jimwins said:

    Welcome Nathan
    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. :)

    Hi Jim,
    Thanks for giving me
    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
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #6
    Mid-Treatment
    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

    .
  • Unknown
    Unknown
    #7
    Max Former Hodgkins Stage 3 said:

    Mid-Treatment
    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

    .

    Hey Max--
    You're right, I do
    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
    KatMat Member Posts: 62
    #8
    unknown said:

    Hey Max--
    You're right, I do
    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

    R-Chop
    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
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #9
    unknown said:

    Hey Max--
    You're right, I do
    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

    Cumulative

    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
    allmost60 Member Posts: 3,178 Member
    #10
    Welcome...
    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
    anliperez915 Member Posts: 770
    #11
    Hi Nathan
    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
  • Unknown
    Unknown
    #12
    anliperez915 said:

    Hi Nathan
    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

    Hi Liz
    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
    forme Member Posts: 1,161 Member
    #13
    Welcome
    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
    Go_go_Gi_gi Member Posts: 84
    #14
    forme said:

    Welcome
    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

    Welcome
    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
  • Unknown
    Unknown
    #15
    Go_go_Gi_gi said:

    Welcome
    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

    Thanks Susan and Lisha
    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
    jimwins Member Posts: 2,107
    #16
    unknown said:

    Thanks Susan and Lisha
    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

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

    Thanks for making me smile.

    Jim
  • Go_go_Gi_gi
    Go_go_Gi_gi Member Posts: 84
    #17
    jimwins said:

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

    Thanks for making me smile.

    Jim

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

    Love to smile--

    Susan

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