thirty year survivor now having medical issues--tell me I'm not alone

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  • paulaandersen
    paulaandersen Member Posts: 6
    SIDE EFFECTS
    I am a 5 year survivor of NHL. I received 22 radiation treatments from the base of my brain to my collar bones. My salivary glands were affected and now I have no thin saliva, only thick saliva. I'm constantly coughing up phlem and my ears plug up on me too. I try to go and get them cleaned often at the ENT. I also received 6 chemo treatments (RCHOP) and 6 intra-thecal chemo treatments in my spinal column. Now I suffer from hip pain since January of this year and noone seems to be concerned. Has anyone else ever had these treatments to the spine and if so, have you suffered any side effects such as back pain or hip pain?
  • LCollodi
    LCollodi Member Posts: 1
    I am not alone!
    Wow I am so happy to have found this site. I am a 18 year survivor of Hodgkins and now 2 months from melanoma. I really thought I was going crazy. I am 44 years old. I am having all the same symptoms you all are experiencing. I had radiation from tip of ears to just below the breast and having all sorts of side effects. Lung capacity very minimal, loosing teeth no saliva, lumpy breasts and irregular heart beat. I am a martial artist, and just got into working out and have lost 30 pounds. I have done this before but hit a wall when it comes to lungs and pain. This time I refuse to give up and when I found this site I cried at the joy of knowing I am not alone but cried because of all of you suffering this same pain. So this morning I shot my Doctor a message and he is refering me to a pulmonary doc. Thank goodness!! I want answers and I want to get passed this. I do understand they don't do the radiation treatments like they did in the 80's and 90's. I know the chemo abvd (7months)is what i got and 2 months of radiation. Which I ended up in the hospital for 2 months due to burning my inners. Anyway, I thank you all for your support and we can get through this together.
    With a smile,
    Lisa
  • GalacDad
    GalacDad Member Posts: 40
    LCollodi said:

    I am not alone!
    Wow I am so happy to have found this site. I am a 18 year survivor of Hodgkins and now 2 months from melanoma. I really thought I was going crazy. I am 44 years old. I am having all the same symptoms you all are experiencing. I had radiation from tip of ears to just below the breast and having all sorts of side effects. Lung capacity very minimal, loosing teeth no saliva, lumpy breasts and irregular heart beat. I am a martial artist, and just got into working out and have lost 30 pounds. I have done this before but hit a wall when it comes to lungs and pain. This time I refuse to give up and when I found this site I cried at the joy of knowing I am not alone but cried because of all of you suffering this same pain. So this morning I shot my Doctor a message and he is refering me to a pulmonary doc. Thank goodness!! I want answers and I want to get passed this. I do understand they don't do the radiation treatments like they did in the 80's and 90's. I know the chemo abvd (7months)is what i got and 2 months of radiation. Which I ended up in the hospital for 2 months due to burning my inners. Anyway, I thank you all for your support and we can get through this together.
    With a smile,
    Lisa

    Not alone also
    I too, am glad to have come into this site. I am a 2 yr survivor that also went through the ABVD process. Like you,, I have the problems with decreased lung function, thick saliva, pains. My docs had let me know at the beginning the lung function decrease was going to be a given since they were going with the chemo and radiation. I've tried everything I can to get back to the spot I was before, but just can not get to the same level anymore. That does'nt keep me from trying though, and it gives the guys in the shop a good laugh when I try and show up the younger ones.( I'm 44 also)
    Keep up the good fight!
    Dave
  • PatrickTX0860
    PatrickTX0860 Member Posts: 1
    GalacDad said:

    Not alone also
    I too, am glad to have come into this site. I am a 2 yr survivor that also went through the ABVD process. Like you,, I have the problems with decreased lung function, thick saliva, pains. My docs had let me know at the beginning the lung function decrease was going to be a given since they were going with the chemo and radiation. I've tried everything I can to get back to the spot I was before, but just can not get to the same level anymore. That does'nt keep me from trying though, and it gives the guys in the shop a good laugh when I try and show up the younger ones.( I'm 44 also)
    Keep up the good fight!
    Dave

    30 years Hodgkin's survivor
    I just turned 50 a few weeks ago and am kicking off my 30th year of surviving Hodgkin's, not once but twice. I was diagnosed Stage 3B Hodgkin's as a junior in college in 1981 and had full body radiation from my neck to my hips for several months, along with having my spleen removed and a number of lymph nodes in my abdomen also clipped. I was in remission until almost exactly 4 years later when I had a recurrence, this time doing the infamous ABVD chemo. However, I had to stop chemo just over half-way due to the massive side effects, but there was no presence of the disease when I did.

    While I thankfully haven't had the drastic side effects some of you have, which I thank the professionalism and skill of my doctors and nurses for every day, my current doctor is warning me of the potential ones to come and we're taking pro-active action to meet them. My oncologist has me on treatments for immune effects due to my missing spleen (I tend to get sick when someone coughs nearby). I do have some damage to one of my heart valves, but it's very minor. My cardio doctor agreed that it was probably radiation/chemo damage. Other than that, 2 complete stress tests have shown only minor blockage consistent with my age and no other problems. I also have a condition known as Schatzki's Ring, which is scar tissue likely caused by radiation in my throat, which I have to have treated (endoscopy) about every year or so. Aside from the mental demons that appear every so often, that's the extent of my side effects so far, but I am constantly wary and being checked yearly. Obviously, there's no guarantee that something drastic won't happen but it pays to be constantly vigilant.

    For those of you new survivors that might be reading this, I'll leave you with a positive note and some hope for you. First, hunt down and never let go of a good oncologist and treatment staff that truly care for and protect you at every step. These people are vital to your future survival in a most literal sense. Without them, I would not have had a career spanning 26 years now in telecommunications, my wonderful wife of 16 years, or my two miracle children that are strong, healthy, and intelligent, and that I had no hope of ever being able to have!

    Never give up! Never surrender!
    Pat
  • nkay26
    nkay26 Member Posts: 2

    30 years Hodgkin's survivor
    I just turned 50 a few weeks ago and am kicking off my 30th year of surviving Hodgkin's, not once but twice. I was diagnosed Stage 3B Hodgkin's as a junior in college in 1981 and had full body radiation from my neck to my hips for several months, along with having my spleen removed and a number of lymph nodes in my abdomen also clipped. I was in remission until almost exactly 4 years later when I had a recurrence, this time doing the infamous ABVD chemo. However, I had to stop chemo just over half-way due to the massive side effects, but there was no presence of the disease when I did.

    While I thankfully haven't had the drastic side effects some of you have, which I thank the professionalism and skill of my doctors and nurses for every day, my current doctor is warning me of the potential ones to come and we're taking pro-active action to meet them. My oncologist has me on treatments for immune effects due to my missing spleen (I tend to get sick when someone coughs nearby). I do have some damage to one of my heart valves, but it's very minor. My cardio doctor agreed that it was probably radiation/chemo damage. Other than that, 2 complete stress tests have shown only minor blockage consistent with my age and no other problems. I also have a condition known as Schatzki's Ring, which is scar tissue likely caused by radiation in my throat, which I have to have treated (endoscopy) about every year or so. Aside from the mental demons that appear every so often, that's the extent of my side effects so far, but I am constantly wary and being checked yearly. Obviously, there's no guarantee that something drastic won't happen but it pays to be constantly vigilant.

    For those of you new survivors that might be reading this, I'll leave you with a positive note and some hope for you. First, hunt down and never let go of a good oncologist and treatment staff that truly care for and protect you at every step. These people are vital to your future survival in a most literal sense. Without them, I would not have had a career spanning 26 years now in telecommunications, my wonderful wife of 16 years, or my two miracle children that are strong, healthy, and intelligent, and that I had no hope of ever being able to have!

    Never give up! Never surrender!
    Pat

    Patrick you are amazing! So

    Patrick you are amazing! So is everyone on this thread! I am in the middle of treatments right now,  and may need radiation too... 

    But like Patrick says,  never give up, never surrender. =) 

  • 40yearsandcounting
    40yearsandcounting Member Posts: 18 Member
    nkay26 said:

    Patrick you are amazing! So

    Patrick you are amazing! So is everyone on this thread! I am in the middle of treatments right now,  and may need radiation too... 

    But like Patrick says,  never give up, never surrender. =) 

    surviving Hodgkins

    Just want to add to Patrick's sentiments- I'm a 40 year survivor of Hodgkins, diagnosed in 1972 when i was 15. Had LOTS of radaiation, chemo, surgery, etc.  I've also had my share of the after effects of the radiation used in those days. The good news is that A. I'm still here! and B. The medical community has learned so much from people like Patrick and me, and all the other brave survivors you have and will meet on this site. They have figured out ways to spare newly diagnosed Hodgkins patients from many of the long term issues that us "old" folks are dealing with. So, stay brave, stay positive, never give up, and know that you are not alone. We are all here rooting for you!!! Take care- Erin