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Thread: New user, new Hodgkin's patient

  1. #1

    New user, new Hodgkin's patient

    I was diagnosed with Hodgkin's lymphoma about a week ago, stage 3, with "B" symptoms, so 3b I guess. A bone marrow biopsy (ouch!) showed it had not yet spread there.

    Chemo will start for me in a week, and I think that's the only treatment they are doing - I guess I will find out when I question my oncologist in more detail at my next appointment.

    I've done a lot of reading on Hodgkin's since it was first suspected, and I do have one question, in case anyone might have an idea: from my reading, it seems like my survival chances should be much higher than my oncologist says. I am a 34 year old male with Hodgkin's stage 3b, and she told me my chances of being alive and Cancer-free in 5 years are 65%. Does that seem about right to others, or low? If it is low, what might account for the discrepancy?

    Anyway, just wanted to briefly introduce myself - this is all new to me, so talking to others who are going through it or have been through it will be nice.

  2. #2
    Administrator Top User brainman's Avatar
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    Karl, I am very sorry about your cancer. I do not know the survival statistics for people with Hodgkin's Lymphoma. What I do have is a general philosophy about prognosis. I do like to know my prognosis but only in order to set priorities for the things I still would like to do with whatever time I still have. (If my original prognosis had been correct, I would have died at least 5 years go.) However, after setting my priorities, I try to set aside my prognosis and just live each day trying to achieve those priorities. It is easier said than done, but it is the only way I have found to deal with my cancer.

    You are in my thoughts and prayers.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
    Karl,

    you're forgetting a very important part of your prognosis, which no other cancer patients get. CANCER FREE!! This isn't a matter of controlling the cancer and keeping you alive as long as possible. This is getting rid of your cancer all together and not developing some other cancer as a result of the chemo. This is something that no other type of cancer patients have. Hodgkins is the only cancer where they actually dare to use the word cure.

    To understand your prognosis better, and this took some figuring out for me, when I was still in the stage of figuring out whether or not I needed to start studying for finals (going to church), the baseline is all those at any stage Hodgkins. Let's say a straight 80% for Hodgkins (I think it might be a little more), then you are moved up or down based on your symptoms, age, sex etc. If we took off 5% for male, 5% for type B (having other symptoms), 5% age... you'd be a 65%. But this means diddly, beating cancer has to do with attitude. Men tend to be babies (why they lose 5%), old people complain (they lose 5%), if you have other symptoms you think the world is coming to an end with chemo (another 5% gone). So, just change your attitude. (I'm being humerous here, no reason for anyone to take offense!)

    I was diagnosed a month ago (almost) with stage 3 "A", (barely a 3, though). I refuse to listen to prognosis (haven't asked). My prognosis as far as I'm concerned is 100% because I'm too damn stubborn and dying just isn't an option at this point in my life or any point in the near future.

  4. #4
    Thanks guys.

    brainman: I agree that the numbers the docs give shouldn't be treated as absolute gospel. I'm just wondering why mine don't match-up with what my research showed. Thanks for the words of encouragement.

    McJen: Your post made me chuckle. I do have a question though - why would they more confidently say they can "cure" Hodgkin's, when it has such a high reoccurance rate? Can they tell if it's all the way gone or not? This is all new to me.

  5. #5
    Administrator Top User ChemoMan's Avatar
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    Hi Karl

    Those figures you presented for 5 year survival are very very good. It means they achieve cures in 65% of cases. Considering you have stage 3b which is very advanced, those figures are very encouraging. The survival rates I have read state 85% 5 year survival in stages 3 to 4 by the way.

    Try and get figures for age groups, and you might get an even bigger surprise. I know in my type of lymphoma that the older you are the worse your prognosis is, and this fact drags down the overall 5 year survival rate.

    As for relapse , don't worry about it until you are cancer free. It will be a concern to you as it is to all of us. Nothing you can really do except wait and see.

    Cheers and good luck
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #6
    hidden among what you are reading on the net and this took me a bit to figure out...

    you can cure the Hodgkins, but the end result is a 25% greater chance of developing some other cancer like lung cancer or breast cancer. The chance of redevloping Hodgkin's is less common then developing some other cancer (from what I read). So, yes they are curing Hodgkin's but the possiblity of developing some other cancer.

    Another way to look at it is if you had not had Hodgkin's what would have been your chances of developing some sort of cancer in the next 5 years? add 25% to that figure. That all takes into consideration all the factors of age, health habits, family history etc...

    So, to say that your chances of being cancer free is 65% means that you also won't develop a different type of cancer in the next 5 years after getting rid of the Hodgkins (not just Hodgkin's returning). You know all those tests you've had the past week or so, well they will be doing those tests regularly. They won't stop treating until you cry uncle or the Hodgkin's is gone. Once it's gone they are going to be running you through those tests every 3 months for the first couple of years and then every 6 months and after about 5 years once a year. For the rest of your life you will be taking these tests (although I doubt they'll do the bone marrow test every time unless they suspect something).

    you need to let it go though, it doesn't matter. The end result is you are given a better than 50/50 odds of living for 5 years if you spend 6 months doing chemo. Seems like a small price to pay when you consider all the living you can do in 5 years. You don't have a choice in the matter, it's the best answer they've got. Take it, run with it. Take it with a smile, because 30 years ago (had you developed this when you were 4) your prognosis would be about 5%.

    As Nickleback would say "AMEN, I'm Alive!"

  7. #7
    Administrator Top User ChemoMan's Avatar
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    hello again

    That's the spirit !

    I don't know where you got the 25% secondaries from, I have read 3% and that is with chemo ( CHOP) and radiation. Secondaries usually occur 20 to 30 years after treatment so maybe when you are 70 you might get secondaries, but even with your figures there is a 75% chance you will NOT get the secondaries anyway.

    You have 3b if I remember rightly. It is unlikely that you would have survived 12 months untreated. With treatment it is very likely that you will live to be an old man. A bit of a no brainer really !

    Your cancer was quite advanced when you got your diagnosis, please don't be overly concerned, this is common in HD. With hindsight is there anything that you overlooked that could have got you into the doctor sooner? I have read that the initial presentation of HD is insidious and very hard to detect, so usually HD is well advanced when diagnosed. Is there anything you can think of that could of alerted you to the fact that something was wrong?

    Cheers
    Age 57
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    I'm gonna answer that question even if you weren't asking me.... (stage 3 A for my HD... meaning no other symptoms)

    First, I had a strange symptom that is very rare in HD. When I drank alcohol (mixed drinks) I felt my chest was closing in on me. I assumed because I only do mixed drinks (not beer or wine) this was due to the fact that I either had an alergy to the alcohol or it was a sugar related reaction (most of my family has some form of diabetes). This was a good year and half before I was actually diagnosed.

    This summer when opening the pool I developed my usual rash from the sun. (I'm very fair skinned, this rash is in no way related to the HD). I also, at the same time developed a lump right on the corner of my left collar bone. It didn't hurt. My father has a similar lump on his hand, my brother had one on his cheek bone. Neither of them are cancerous so no worries on my part. I went to the doctor about the stupid rash (the rash follows my "red neck" lines on my arms) I mentioned the lump. I mentioned that I just hadn't been feeling well, nothing specific, just not my usual energetic self when it came to the spring time cleaning. (figured with the swollen gland I was just fighting an infection)

    The doctor was more concerned about the lump and noticed another swollen gland next to it. Did a blood test and decided it wasn't anything serious like cancer because my blood counts were normal (HAHAHAHA) Sent me home, doing nothing for the rash or the lump. Told me to come back in a week if it was still there.

    Almost 2 weeks later, I went back for the rash that was now attacking my legs wherever my shorts didn't cover. (still this rash was my main concern). Still had the lumps, but felt I was feeling better. The doctor did a chest xray. The doctor claimed the chest xray didnt' show anything (LIAR!) and wantedd a biopsy done on the enlarged lymph node.

    Week later I was sliced and diced and diagnosed. Within 3 weeks I started chemo.

    The rash which is completely unrelated (gone now because I don't go in the sun at all) is what got me to the doctor for the first time in 3 years. Had I realized that chest pain when drinking was a symptom, I would've been in sooner. I really expected the biopsy to come back with an infection somewhere and be given an unhealthy dose of antibotics and sent on my way. I honestly didn't even know the doctor was doing the biopsy looking for Hodgkin's or Lymphnoma, that was something that happened to someone else. (and Hodgkin's was something those poor little kids died from) yes, I've learned a lot in a few weeks!!

    I never mentioned my response to alcohol to anyone until after diagnosis. So, I think it is luck and a smart (but LYING) doctor that I found out at all.

    that's my story and I'm sticking to it...... LOL (can you tell I hate when people lie to me?)

 
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