The Leukemia & Lymphoma Society - Fighting Blood Cancers
12 Replies Latest reply: Dec 5, 2010 5:11 PM by tiamet RSS

exhausted everything, now surgery for hodgkins? anyone else been threw this?

punky220 Registered Users
Currently Being Moderated

Hi,

I was diagnosed March of 2009 with hodgkins lymphomia, i've had several chemos, radiation, and two stem cell transplants, and yet i still cant get rid of a stubborn area still infected, now they are suggesting surgery to try to remove what is still infected. Has anyone else experienced this? The surgern has never performed this, and im starting to feel like a guinea pig....

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    AndyH Registered Users
    Currently Being Moderated

    Hi,

         I don't know if you have considered any CAM (complimentry alternative medicine) approaches? If not please check the blog in my website www.beatcancer4ever.com and let me know what you think......

     

    Andy

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    Beezer Registered Users
    Currently Being Moderated

    You don't mention where you need the operation.  After chemo I ended up having my spleen removed b/c the cells were still present.  Then, had radiation and have celebrated 10 years cancer free!  Good luck to you!

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    Dand1212 Registered Users
    Currently Being Moderated

      So sorry to hear that. I went through six months of ABVD and then a turn around six months later with a stem cell transplant just once and I've been suffering with side effects ever since, ten years now.  I can't even imagine two transplants. Have you got the energy to tell about how it was, going through the second and how long it was in between? I had to have my teeth removed because they burned the roots with the radiation. This can be a very tough road to hoe. They also had to operate and take some lymph nodes out before radiation. I don't know if that would amount to the same thing they are talking about doing with you, but it did work. They were reluctant to operate on the ones in my neck and that may be why they had to do so much damage in that area. Let me know if this helps or you want or can talk more.  

    • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
      punky220 Registered Users
      Currently Being Moderated

      Wow,

      I have been pretty lucky, ive felt good this whole time, my goes like this....Was diagnosed with hodgkins lymphoma in march of 09. Started with the abvd chemo, didn't respond much to that, tried rice chemo, still no responce, started collection of my own stem cells (enough for two transplants) had first stem cell transplant in jan. It shrunk the mass in my abdomen 30 %. (area badly infected is between small intestines and bowels) had radiation right after 1st transplant, area stayed the same size but less intense...went for 2nd stem cell transplant in may. (a few weeks longer in recovery, but had full energy back in about 1 month) Had a cat scan, showed i was "cancer free". Two months later had  a petscan, dr realized im not cancer free but still had the same area in the abdomen lighting up, catscan did not pick up on it as the petscan is more sensitive. Then he refered me to surgern, who i met with and said normally he wouldn't touch me, but where all else failed he could open me up and see whats going on, not sure if he will be able to remove anything till he sees whats going on, talking about another 6-8 week recovery time if i have this done.

      • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
        Dand1212 Registered Users
        Currently Being Moderated

          That's a lot. I had to go looking for information on Rice. It's been a number of years since I went to cancer groups for Lymphoma in Portland. Back then, say 2001 or 2, I remember folks talking about RICE, but most were folks with non-Hodgkin's. Was there a different chemo they used during your transplants? Are your doctors saying that there might be some time yet, to see if this is just a remnant not yet cleared? When I had such a quick turn around after my ABVD chemo, they decided to throw the kitchen sink at me. I had a late start on the first chemo because my primary doctor kept misdiagnosing what I had been certain was cancer from the start. Then the complication of a planned out of state move that set me out an extra two months, making for a full eight months wasted before the start of chemo. The doctors said this was crucial and the probable cause for the second diagnosis. So, before my transplant they went with two rounds of Cysplatin with a month in between each and then a three week isolation for transplant a month later, with Cytoxin and full body radiation in the first week and stem cell infusion after about two weeks. I was very very ill by that time from all the large doses of chemo and radiation and the ferocious onset of the cancer. They also did some pin point radiation just before stem cell collection in the weeks before hospitalization. I was in such bad shape by then that there was only enough cells to collect for one treatment. I never really understood just how potent all of those treatments were compared to other transplants. I finally asked my oncologist about three or four years out, to characterize just how much chemo I got on a scale of say 1 to 10 with other simular transplants. She told me she had gone and asked ( during my hospitalization ) the transplant department head, if they were trying to kill me. Jokingly of course. But she then said she had never seen such a high level of toxicity. Up until then, I had wondered why when I would meet other BMT folks, whom seemed to be doing much better than I, why that was so. I got so much radiation, within those three weeks before and then full body during transplant, that I will never have that option available to me again. I knew going into it that this transplant was a do or die situation.

         

           I know from my own experience that it's very frightening when they first tell you it's an eighty percent chance you'll have full recovery or be cancer free, and then you find that you are in that 20th percentile. People were offering all these alternatives and I even tried some. A few years later I heard of some detox stuff that is being done by some Chinese medicine people. I considered it because I still believe that there may have been some build-up of chemicals in my system, from too much exposure to carcinogens, that I had been exposed to where I worked. I was already cancer free by then and it would have been prohibitively expensive, but I've always wondered if it might have been worthwhile to have found that earlier. My oncologist has always held that in my case it was most likely these chemicals and my long exposure to them that caused my cancer. By the time I was rediagnosed I had been doing alternative medicines for four or five years, so I was a bit suspicious about any body's claim of some new miracle cure, but continued to take lots of supplements just in case it might help. But the sheer weight of evidence that none of that had prevented the cancer to begin with nor did it prevent the relapse and the fact that I was now looking at a far more serious second diagnosis, made me very skeptical and almost fatalistic about trying anything suggested by naturlalists. I decided nonetheless that I would continue to take anything I thought might make my body healthier and was sure wouldn't interfere with the chemo treatments. To make matters even more scary, was that the transplant was part of a two part double blind study. So I would either get this more tried and true regimen or a new medicine regimen that didn't include radiation.

         

            As I have said in my posted story, I didn't do any research on either, because frankly I was already frightened enough as it was. I did however, decide to just take one step ahead at a time and try to keep the most positive attitude about recovery as possible. I decided to trust the "mechanics" ( doctors ), a term I use to describe them. I figured if I was having my car worked on, I would go to the best repairman I could find. I knew I had to trust that he knew more about fixing my car than I did and this was the case with these doctors. They have devoted their lives to finding the best ways to help folks survive and/or beat cancer. It never hurts to get a second or even third opinion though, if your intuit is telling you to do so. I was told that my transplant was not going to be a piece of cake, but I had no other alternative, so it seemed best to visualize success and put my faith in the doctors. The doctors told me there was up to a fifteen percent chance I would not survive the transplant, this after having been told not ten months earlier that I had a twenty percent chance that the cancer would come back. After having lost at the odds contest already, it was staggering to hear those odds this time around. I decided that if there was ever a time in my life when I needed to leave behind a negative outlook or pessimism, it was now. I felt quite powerless to be able to influence my spirit to overcome self destructive cells, but decided I really needed to override this tendency and think positive thoughts about my own inner spirit and to just "act as if" in the moments when I faltered. I'll never know how much this success was the magic of science or the science of magic or a combination of both. To this day I still struggle with complications from those treatments. I still talk with my body, down to it's most basic cell structure, and ask for it to support it's highest and best good. It sounds hokey, but it seems to work.   Daniel

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    punky220 Registered Users
    Currently Being Moderated

    Hi,

    The area affected is between the intestines and bowels, they do not want to give me anymore chemo or radiaition, as after having two stem cell transplants,one in January and one four months later in may, they do not think my body could handle it. It is in such a tricky area, they dont even want to do a biopcy as they think they wouldnt get the right tissue. I have booked for a second opinion to see what other people would say.

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    punky220 Registered Users
    Currently Being Moderated

    New update: Just saw my doctor, and got the results of my latest catscan, the cancer is progressing, now they dont want me to have a surgery.

    • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
      AndyH Registered Users
      Currently Being Moderated

      Hi,

           I was wondering if you had thought about adding some alternative or

      'non-AMA" nutritional tools to your fight with cancer? I AM NOT SELLING ANYTHING. There are several of these I have started using since my NHL re-occured after 7 years of "quiet" time. I have put in about 150 hours of research time so far and I thought it was important to share some of what I am using with you. You might want to use the following either singly or in combination:

       

      Essiac

      Graviola or Soursop

      Amygdalin/Laetril/B17 or Raw Apricot Seeds

      Fresh Broccoli Sprouts

       

      All of the above provide support to the immune system or target cancer cells in one way or another.

       

      Andy

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    Dand1212 Registered Users
    Currently Being Moderated

      So sorry to hear that. I know the last thing you probably want to consider is another transplant, but have they discussed the possibility of using some one else's cells? Are they telling you that they are working on finding another solution or are without options? I can only imagine how frightening this must be. I have been reluctant to list my email address, but if you want  to talk more personally my address is Dand1212@msn.com. Please don't feel compelled to write, just an option if you feel the need. I hope you are still considering a second opinion. There must be someone somewhere in the country's medical community that has some experience that is similar. I hope your doctors are reaching out to find such help. Please keep me updated.

    Daniel

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    Dand1212 Registered Users
    Currently Being Moderated

      Hi Andy, it just so happens my wife is an expert on the subject of herbals, diet, etc. She is a Naturopathic Doctor and has written four books on herbals and interactions with pharmaceuticals that are used for Naturopathic students and some allopathic doctors wishing to take board exams or for general use by either in practice. She has written several others on herbal treatment for alcoholism, collage level science and biology teachers for AP high school courses, etc.. She is also an editor, science and medical editor for some other upcoming books on Naturopathy and has worked with NIH for alternative medicine study as a grant reviewer. I have been using diet and herbals for a number of years, but would not presume to say I am educated or qualified in that area. My wife's name Is Zora DeGrandpre and can be googled through Lulu books. She also has her own web site, but I'm not sure if I can put that information up here. If you are looking for more information regarding alternatives, you can contact me by email and I can get you other information about her there. I have my email on a  post above. I found great benefit through use of Chinese herbals and acupuncture as well. There is a great professor, doctor and Master of Chinese Medicine, who teaches at the naturopathic collage here in Portland across the river from where I live, that I have used for post transplant care. There are some Naturopathic doctors who work with cancer patients here and across the country that my wife knows of or talks to as well. My wife would be the first to admit that there is great benefit from both herbals and pharmaceuticals. Her early training was in research and drug design, so she believes one can compliment the other. There are pharmaceuticals for instance whose actions are much more viable for some diseases where natural medicine can compliment or be used to help with side effects. In other cases an herbal might be more useful with less side effects to bolster the immune system or treat underlying issues ahead of cancer treatment or in conjunction with.

     

        Naturally I don't use my wife as a doctor, but seek out others in her profession as well as my allopathic oncologist. I have also used homeopathic medicine as well and have a doctor I see for that on occasion. Although I couldn't get most doctors to admit it, when I went through my various treatments for cancer, they often spoke about how well I was doing by comparison to others with similar regimens, for me the answer was obvious. While the natural medicines didn't prevent the cancer, it sure seemed to keep me in better shape so that I could survive the cancer treatments. The fact that today I live a much more active life than what my doctors would have thought possible, is a testament to use of holistic medicines. I am not a vegetarian, but I eat a lot of whole foods, including a plate of raw vegetable my regular dinner every night, along with mostly whole grain foods. We keep prepared foods to a minimum as well and try to stay away from anything with preservatives. We grow our own vegetables and freeze or dehydrate what we can. In the last fifteen years I have completely changed how I eat and the results are better health. However I was an out of control alcoholic and addict to the age of twenty eight and it took years to make those changes, doing much damage along the way. Did that answer your question?

    Daniel

  • Re: exhausted everything, now surgery for hodgkins? anyone else been threw this?
    tiamet Registered Users
    Currently Being Moderated

    Hello Punky220,

     

         I have refractory MCHL, Stage IVb+s+e, diagnosed in 2007,  and have been through all the vrious chemo's and SCT myself.

    My Onc and I started to look at various drug trials as an alternative.  We ruled out SGN35 as too many were getting severe neurophathy and we finally agreeded on RAD001 (Everolimus).

         Since this drug is already used for kidney cancer and to prevent organ rejection there is a pretty good understanding of what the side effects can be and how to handle them

         I started the trial just over a week ago and so far, other than extreme fatigue, no serious side effects.

     

         I would suggest that you look into someof the trials out there.

     

    Wishing you all the best,

    Dave

More Like This

  • Retrieving data ...

Legend