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6th times a charm

chemoqueen
Posts: 2
Joined: Feb 2001

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
Posts: 40
Joined: Oct 2000

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
Posts: 2
Joined: Feb 2001

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
Posts: 40
Joined: Oct 2000

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's picture
dpomroy
Posts: 137
Joined: Dec 2000

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
Posts: 2
Joined: Apr 2001

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

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