6th times a charm

chemoqueen

Hello;
I'm a 38yr old woman with a reaccurance of Hodkins disease for the 6th time. I've been through it all-here's my reume;
1984-CAV,MOPP,and ABVD-with 2,000 rads of radiation at Sloan. 1986-Autogolous BMT with CBV protocol. 1992-VP16 with prednisone 1998-Gemzar-no response.1999-6/2000-ICE protocol.Feb 2001-ready for maybe Velban. I started when I was 21 yrs old,I'm married with one daughter that I HAD DURING MY LONGEST REMMISSION in 1992. Anyone else out there that comes close to my story?

tamis

My goodness what you've been through is terrible. I can't say that I come close to your story, but here is how mine goes. I'm a 29 female & I was diagnosed in July 1999, at age 27, with Hodgkins stage IIB. I had the ABVD protocal, 6 cycles and it did nothing. I was sent for a new treatment protocol, 4 cycles of CEPP, and nothing!! Then I had High Doses of another protocal, Cytoxan, VP-16, & 2 others(can't remember the name off hand), then a Stem Cell transplant. Finished that in April 2000, I had 4 weeks of radiation and finished it in July 2000. In September 2000, I had a recurrence in my neck & underarm and went back in Oct, for more radiation. I recently had a CT Scan 2 weeks ago which show negative. I hope this is it. I can somewhat relate to your story, but not nearly have been fighting it as long as you. I was told if it comes back I will have a bone marrow transplant from a donor. My sister was tested and she is a match so they have that idea stored away in case I ever need it. Have they considered or tested another person for a BMT for you? I pray & wish the best for you!

chemoqueen

tamis said:

My goodness what you've been through is terrible. I can't say that I come close to your story, but here is how mine goes. I'm a 29 female & I was diagnosed in July 1999, at age 27, with Hodgkins stage IIB. I had the ABVD protocal, 6 cycles and it did nothing. I was sent for a new treatment protocol, 4 cycles of CEPP, and nothing!! Then I had High Doses of another protocal, Cytoxan, VP-16, & 2 others(can't remember the name off hand), then a Stem Cell transplant. Finished that in April 2000, I had 4 weeks of radiation and finished it in July 2000. In September 2000, I had a recurrence in my neck & underarm and went back in Oct, for more radiation. I recently had a CT Scan 2 weeks ago which show negative. I hope this is it. I can somewhat relate to your story, but not nearly have been fighting it as long as you. I was told if it comes back I will have a bone marrow transplant from a donor. My sister was tested and she is a match so they have that idea stored away in case I ever need it. Have they considered or tested another person for a BMT for you? I pray & wish the best for you!

Thank you for replying. Somtimes I don't always get on the computer but finding this site has got me hooked! You've beeen through alot too! Can I ask you about your stem cell Transplant-where did you have it done,who were your docters,andwhat chemo was given-was it a mini allogeneic transplant?Now,I'm 38 yrs old but Hodgkins knows no age-right? I remember them telling me I would probally be sterile but I didn't believe them.And sure enough,I was able to have a beautiful baby girl who is know 8yrs old.Although it did reappear while I was pregnant and had to go on treatment right after. Did the docters tell you you may be sterile also? I wish you all the best an d I am looking forwars to your answers.Let's keep in touch!Oh, in answer to your question,my next treatment which will be starting after I get a port will be Velban,and then a mini allogeneic transplant if needed-my 2 brothers will be tested soon.Thanks!

tamis

chemoqueen said:

Thank you for replying. Somtimes I don't always get on the computer but finding this site has got me hooked! You've beeen through alot too! Can I ask you about your stem cell Transplant-where did you have it done,who were your docters,andwhat chemo was given-was it a mini allogeneic transplant?Now,I'm 38 yrs old but Hodgkins knows no age-right? I remember them telling me I would probally be sterile but I didn't believe them.And sure enough,I was able to have a beautiful baby girl who is know 8yrs old.Although it did reappear while I was pregnant and had to go on treatment right after. Did the docters tell you you may be sterile also? I wish you all the best an d I am looking forwars to your answers.Let's keep in touch!Oh, in answer to your question,my next treatment which will be starting after I get a port will be Velban,and then a mini allogeneic transplant if needed-my 2 brothers will be tested soon.Thanks!

Hello again,
My Stem Cell was an Autologous Transplant, which they used my peripheral blood stem cells and froze them until after the treatment. Before the actual transplant I had high doses of chemo. First was Cytoxan, which was an all day drip from 8:00-5:30. The next was VP-16 which required a two day hosptial stay. Then I was admitted again for the next two chemo's and I can't remember the names of them other than they started with "M", and had the transplant as well at that time. I had all this done in Boston at the New England Medical Center. I have a 2 year little girl, Shannon, who help get me through this. I am so thankful for her, she's quite a blessing. I am now sterile because of all this! It was confirmed at my recent GYN visit last week. I am hitting menopause and it really stinks! I guess it will get easier and I am so glad I had my daughter when I did. You mentioned you were having a Port placed. did you have one before? I have one and it really is great and I'm so glad I decided to do it so I wasn't always poked at. Please keep in touch with me and let me know your progress! I am scheduled Tuesday the 13th for a Gallium Scan.

dpomroy

chemoqueen said:

Thank you for replying. Somtimes I don't always get on the computer but finding this site has got me hooked! You've beeen through alot too! Can I ask you about your stem cell Transplant-where did you have it done,who were your docters,andwhat chemo was given-was it a mini allogeneic transplant?Now,I'm 38 yrs old but Hodgkins knows no age-right? I remember them telling me I would probally be sterile but I didn't believe them.And sure enough,I was able to have a beautiful baby girl who is know 8yrs old.Although it did reappear while I was pregnant and had to go on treatment right after. Did the docters tell you you may be sterile also? I wish you all the best an d I am looking forwars to your answers.Let's keep in touch!Oh, in answer to your question,my next treatment which will be starting after I get a port will be Velban,and then a mini allogeneic transplant if needed-my 2 brothers will be tested soon.Thanks!

Hi,
I haven't been through as much as you and Tami have, but I am writing to tell you to keep hanging in there. I am a 42 year old woman diagnosed last August with IIB Hodgkins. Went through a first round of 8 ABVD chemos and restaging showed a 50% improvement, so I am half-way through my second 8. Just had a Mugga scan today to see if my heart is healthy enough for the last 4 chemos before restaging again. If I'm clean I'll have 3-5 weeks of radiation, and if I'm not clean ????? I'll be doing lots of crying. Fortunately I was done having my kids before all of this #$%@, but it has kicked me full tilt into menopause which so far is LOADS of fun! I can't imagine the strength you have had to muster up to deal with all of this 6 times. You truly are the chemo queen! I wish you the best of luck. Deb

lidiamarie

Hi chemoqueen!
I am the caretaker of someone who has had hodgkins for 5 years and she has gone through very similar experiences...all the abreviations u have...she has had...she is presently on EVA and has had a stem cell replacement..the longest time she has gone without chemo is 12 -15 months..she is 34 years old....i believe our experience is very close to yours...perhaps we can discuss...I came in hear very briefly today...but perhaps next time I can provide more specific information...where r u receiving treatment? We are in Chicago

Unknown

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