CancerCompass message board discussion started by Sailor963 on 3/16/2007 http://www.cancercompass.com/message-board/message/all,10417,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am 43 years old, was diagnosed back in January 2006 with stage 3A  Hodgkins Disease and was treated for 6 months with ABVD. I was in full remission from June 06 to Feb 07. Last month they saw an uptick in a PET/CT scan that has lead them to believe a reoccurence may be in the works. They took a CT Scan with contrast to get a better look at the area in my chest and do see some growth that they would like to biopsy to confirm. I will know exactly what it is in a couple of weeks and yes it could be nothing, but odds are it is something. My oncologist has not made any recommendations for treatment as of yet but what I am hoping that other options have been heard about and tried here so I would like to learn more. Sailor963 Fri, 16 Mar 2007 00:00:00 GMT Hello Sailor963 If you would be interested in hearing about some successful alternative therapies please send me a private message. Blessings Shemay On 3/16/2007 Sailor963 wrote:I am 43 years old, was diagnosed back in January 2006 with stage 3A  Hodgkins Disease and was treated for 6 months with ABVD. I was in full remission from June 06 to Feb 07. Last month they saw an uptick in a PET/CT scan that has lead them to believe a reoccurence may be in the works. They took a CT Scan with contrast to get a better look at the area in my chest and do see some growth that they would like to biopsy to confirm. I will know exactly what it is in a couple of weeks and yes it could be nothing, but odds are it is something. My oncologist has not made any recommendations for treatment as of yet but what I am hoping that other options have been heard about and tried here so I would like to learn more. Shemay Fri, 16 Mar 2007 00:00:00 GMT  On 3/16/2007 Sailor963 wrote:I am 43 years old, was diagnosed back in January 2006 with stage 3A  Hodgkins Disease and was treated for 6 months with ABVD. I was in full remission from June 06 to Feb 07. Last month they saw an uptick in a PET/CT scan that has lead them to believe a reoccurence may be in the works. They took a CT Scan with contrast to get a better look at the area in my chest and do see some growth that they would like to biopsy to confirm. I will know exactly what it is in a couple of weeks and yes it could be nothing, but odds are it is something. My oncologist has not made any recommendations for treatment as of yet but what I am hoping that other options have been heard about and tried here so I would like to learn more.Since your relapse is early, you probably cant repeat the ABVD.  A different chemo combination or a stem cell transplant would be options.  Oncrx Tue, 20 Mar 2007 00:00:00 GMT If the recurrence is localized then local irradiation will help and possibly more chemo using MOPP or other non cross reacting chemo.  If it is tumor, did it recur in a place where it was large before initial treatment?  Some studies suggest low dose irradiation to sites of previous bulk disease may reduce recurrence.  Stem Cell transplant can be planned, but I think it may be to early to "go there" yet. Witchdoctor Tue, 20 Mar 2007 00:00:00 GMT Hi my name is Kim.  I first found out I had HD stage 2A in 5/2004.  Went thru standard treatment, abvd, radiation.  Remission until 7/2005.  Went thru dhap, beam and stem cell transplant, remission until 9/206.  I am currently undergoing trail treatment with MDX 060 (3 phase program and I am using only the chemo drug gemcitibine currently, next phase will include antibody).  They told me this disease was easily cured.  I am here to prove them wrong.  I pray everyday that the trail will be the final cure or at least provide sometime to find something else.  I am currently looking into homeopathic options.  But one thing is for sure, we can NEVER give up hope.  My prayers are with you.  Only God knows the outcome. Twin1 Wed, 02 May 2007 00:00:00 GMT Hi Kim.  Sounds like we're in the same boat.  I've been dealing with this since 2002, after failing an auto stem cell.  I recently got rid of a spot with radiation but now am going in for a biopsy next week again.  How is your clincial trial working?Kelly Kellyurb Thu, 24 May 2007 00:00:00 GMT I am going through a similiar situation at this time and I am wondering what your outcome was following the biopsy.  I am scheduled to see a surgeon this afternoon to get a biopsy to see if I have recurring Hodgkins disease. kathys31 Tue, 17 Jul 2007 00:00:00 GMT I am 48, diagnosed 15 years ago with Stage 2 A treated with radiation.. In April I palpated a submandibular node and rushed to the oncologist. He kind of blew me off but I oersisted.. I had a pet scan that was (questionable ) and recommended repeat 9 to 12 monthe later. Couldnt wait so I went to a Head - Neck surgeon. She ordered a CT and found 3 borderline enlarged nodes and agreed to remove them on the 31st. She said there is no sclerosing so that is encouraging. I go from being paralyzed with fear to trying to convince myself that I will beat it "again"Anyone know what the next treatment will be if these nodes are positive., If they are not , then what can they be.I have never had symptoms of any kind.Thanks for hearing me out.Feel gree to email ne at goleary8487@yahoo.comGinny ginny8487 Mon, 23 Jul 2007 00:00:00 GMT Update... MDX 060 was successful in keeping at bay as long as I could take full dose.  Upon completion 5 weeks out went into major progression. Now looking into addtl trials... not much time to decide.  Can only pray that I make the right decision.  Will keep up to date... Twin1 Wed, 10 Oct 2007 00:00:00 GMT  On 5/2/2007 Twin1 wrote:Hi my name is Kim.  I first found out I had HD stage 2A in 5/2004.  Went thru standard treatment, abvd, radiation.  Remission until 7/2005.  Went thru dhap, beam and stem cell transplant, remission until 9/206.  I am currently undergoing trail treatment with MDX 060 (3 phase program and I am using only the chemo drug gemcitibine currently, next phase will include antibody).  They told me this disease was easily cured.  I am here to prove them wrong.  I pray everyday that the trail will be the final cure or at least provide sometime to find something else.  I am currently looking into homeopathic options.  But one thing is for sure, we can NEVER give up hope.  My prayers are with you.  Only God knows the outcome.My husband is going through almost the same thing.  Diagnosed Oct 05, 6 rounds ABVD; relapsed less than 6 months later 2 rounds DHAP salvage chemo, auto stem cell trans, relapsed less than 6 months later.  Now we are at MD Anderson in a clinical trial for MDX 060 and gemcitabine.  He will have his first set of PET/CAT Scans on the 17th of Dec so we will see how it is going.  Seems good but his counts have dropped so low that they had to give him low doses of the gemzar.  They have said that he is noncurable due to the non responsiveness to the prior treatments.  What kind of results have you had. littler38 Thu, 06 Dec 2007 00:00:00 GMT Unfortunately the MDX trial was not successful for me.  I am now back at Mayo Clinic MN... I am currently doing the RAD001 trial.... As of yesterday I am taking a break from the drugs due to low platlet counts.  Trial however seems to be working quite nicely.  6 weeks in an 80% reduction in tumor(s).  Anxioux to have counts return to more normal levels and start drug again.  Very few other side affects.  Good luck, my thoughts and prayers are with you.   Twin1 Wed, 12 Dec 2007 00:00:00 GMT I was diagnosed with Hodgkin's disease in Aug. '97 stage 2A. After chemotherapy and radiation I went into remission. In May of 2001 I found out it was back. This time I did a transplant/rescue using my own stem cells, again I went into remission. In July of '06 my Hodgkin's disease was back, this time I underwent a stem cell transplant with my sisters stem cells and radiation. A couple weeks ago I went for my two year check-up and they found a lymph node lighting up in a PET/CT scan so they biopsied and it was positive for Hodgkin's AGAIN! Now my options are slim, but we are waiting for more testing before we decide how to treat it. Does any one else know anything about EBV in relation to Hodgkin's? Or has anyone else had Hodgkin's reoccure so many times? I am only 30 years old.  katidyd Tue, 28 Oct 2008 00:00:00 GMT I am sorry to hear that you are having to deal with this again.  I know where you are.  As I previously posted I have had ABVD, Radiation (2004), a Auto Stem cell trans (2005), MDX060 antibody with Gemcitibine (2007) and am currently on RAD 001 and Sorafenib.  I can say that I am doing very well on this last treatment.  Tomorrow will be my one year anniversary on these drugs.  I have a 90 percent partial remission from this treatment.  It is a trial but I am very happy with it.  My physicians are at mayo clinic in Rochester MN.  They are the greatest.  I have to travel 8 hr each way 1x a month (hopefully this month that will change to 1x every 3 months).  The doctor tells me that this will probably be a chronic disease that hopefully we can control with these meds (sort of like a diabetic with insulin).  Keep the faith, be positive and live life.  Twin1/Kim  Twin1 Fri, 31 Oct 2008 00:00:00 GMT There is not any chemotherapy treatments out there that I have not tried. I cannot be radiated anymore because I have already been radiated. So they are hoping the tests they are preforming on my latest lymph nodes show that it is the EBV virus associated with Hodgkin's disease. I really am not sure what that means, but this is where I am. katidyd Sun, 02 Nov 2008 00:00:00 GMT My husband has had Hogkins since Oct 05 and had no luck with remission with any type of treatment.  I do not say this to scare you just to say that there are lots of clinical trials out there that could be your answer.  We have been in several clinical trials, they have not worked for us but others in the study have shown great sucess.  Look on the web site for MD Anderson Hospital it would be a great starting spot. Good Luck and God Speed, remember you are not alone in this fight!   littler38 Wed, 05 Nov 2008 00:00:00 GMT