maxietoonses
08-28-2008, 11:32 PM
Hello everyone, I am new to health boards and wish this resource was availl when I recieving treatment. I wonder if there are other survivors who are experiencing some of the long term effects of the Chemo. I hac MOPP/ABVD
regime. I was in stage 4 with tumors in lining of heart and lungs. By the grace of God I am still alive. However I have started having various health problems and I suspect are dt Chemo. I have just developed tachycardia with left atrial enlargement, my pituitary gland is not functioning properly, constant ringing in my ears and have had to have extensive dental work due to the radiation. I feel blessed and look at my life as though I have lived 19 years longer than I should have. I am just curious if there are other long term survivors who have experienced long term effects of chemo and radiation. For those who are recently diagnosed I hope the fact that my survival gives you hope and although I am experiencing some health problems, I have been very healthy up untill the last 2 years. I am 39 years old so I would imagine that the cure rates are even greater now with milder chemo treatment Having Hodgkins and surviving gave me a brand new respect for life and inspired me to live each day as it was my last. Having this disease also caused me to consider life after death, as a result I have experienced a fulfilling life as a Christian. Hope I encourage some and if anyone else is experiencing problems because of chemo or radiation please give me info on what I may have to be aware of. Thanks and I sincerely have compassion for all who suffer through cancer
regime. I was in stage 4 with tumors in lining of heart and lungs. By the grace of God I am still alive. However I have started having various health problems and I suspect are dt Chemo. I have just developed tachycardia with left atrial enlargement, my pituitary gland is not functioning properly, constant ringing in my ears and have had to have extensive dental work due to the radiation. I feel blessed and look at my life as though I have lived 19 years longer than I should have. I am just curious if there are other long term survivors who have experienced long term effects of chemo and radiation. For those who are recently diagnosed I hope the fact that my survival gives you hope and although I am experiencing some health problems, I have been very healthy up untill the last 2 years. I am 39 years old so I would imagine that the cure rates are even greater now with milder chemo treatment Having Hodgkins and surviving gave me a brand new respect for life and inspired me to live each day as it was my last. Having this disease also caused me to consider life after death, as a result I have experienced a fulfilling life as a Christian. Hope I encourage some and if anyone else is experiencing problems because of chemo or radiation please give me info on what I may have to be aware of. Thanks and I sincerely have compassion for all who suffer through cancer
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singer78
08-29-2008, 12:30 AM
Hi and welcome to the Board.
I, too, had Hodgkin's (nodular-something 2A) and am in remission, as of Dec. '07.
I had ABVD (8 treatments) and 20 rad's. Finished in Nov. '07.
I had no idea, the repercussions that would follow...and, you're right. I would imagine they've perfected the treatment throughout the years. I heard that it basically was a "death sentence" if you got this, back in the 70's. Thankfully, we're reaping the benefits of better treatment.
You're young....I'm older than you (in my 50's...hate to admit it) and it has been rough.
This first year, after treatment, I've experienced achiness to no end, breathing problems (pneumonitis), stomach ulcers, acid reflux, gallstones, and anemia. Other than that---I'm "good to go."
When you compare it to the alternative, --- I suppose it's not that bad. At least we're both still here to complain.
I'm sorry you're experiencing some problems. What's your diagnosis? Is it reversible?
Do your doctors admit it's from chemo? Sorry...don't mean to ask too many questions....just curious.
I, too, feel like this disease opened my eyes. I don't take anything or anyone for granted. I feel blessed every morning I wake up. I, too, have also become very spiritual (I was before...just moreso) and thank my Higher Power for "opening my eyes."
Life is beautiful. We have to always look for the rainbow.
Yes, this forum was wonderful for me, going through treatment, and even now.
I've made many friends on here (some have come & gone.....) who have been my "rock."
I'll forever be eternally grateful for whomever had this site in their vision.
I know it's been a wonderful source of support for many people.
Anyway, it's nice to meet you & God Bless. :angel:
Singer
I, too, had Hodgkin's (nodular-something 2A) and am in remission, as of Dec. '07.
I had ABVD (8 treatments) and 20 rad's. Finished in Nov. '07.
I had no idea, the repercussions that would follow...and, you're right. I would imagine they've perfected the treatment throughout the years. I heard that it basically was a "death sentence" if you got this, back in the 70's. Thankfully, we're reaping the benefits of better treatment.
You're young....I'm older than you (in my 50's...hate to admit it) and it has been rough.
This first year, after treatment, I've experienced achiness to no end, breathing problems (pneumonitis), stomach ulcers, acid reflux, gallstones, and anemia. Other than that---I'm "good to go."
When you compare it to the alternative, --- I suppose it's not that bad. At least we're both still here to complain.
I'm sorry you're experiencing some problems. What's your diagnosis? Is it reversible?
Do your doctors admit it's from chemo? Sorry...don't mean to ask too many questions....just curious.
I, too, feel like this disease opened my eyes. I don't take anything or anyone for granted. I feel blessed every morning I wake up. I, too, have also become very spiritual (I was before...just moreso) and thank my Higher Power for "opening my eyes."
Life is beautiful. We have to always look for the rainbow.
Yes, this forum was wonderful for me, going through treatment, and even now.
I've made many friends on here (some have come & gone.....) who have been my "rock."
I'll forever be eternally grateful for whomever had this site in their vision.
I know it's been a wonderful source of support for many people.
Anyway, it's nice to meet you & God Bless. :angel:
Singer
lymphpre
08-29-2008, 08:21 AM
Thanks for posting. It is really good to hear from long-term survivors. I have been living with HD for 15 years now, but unfortunately have had two relapses in that time. I have just had R-ABVD as salvage chemo, and am struggling to bounce back at the moment.
From my earlier chemo, which was ClVPP, a MOPP variant, I made a good recovery, but have had some ongoing problems. My digestive system never recovered fully, and I have endured IBS-type symptoms ever since. I have also had ongoing problems with fissures at the output end of the system - they can really hurt. For years now, my drs. have predicted thyroid problems, which have thankfully not emerged. Blood tests show thyroid function to be borderline at times, but so far it has always bounced back again. I do get episodes of tachycardia, but that is a recent thing, which I attribute to the R-ABVD. That seems to be settling down now though. This regime has hit me hard, but it's my second lot of chemo, and I'm 11 years older than the first time. Too early to say what the long-term effects will be.
I don't think the treament for HD has actually changed that much over the years. Radiation therapy is still standard for early stage, and bulky disease. ABVD is still the standard chemo, with the possible addition of rituximab. Now they inject people with something to stimulate white blood cell production, so infections are less of a problem. The really important factor is early detection and diagnosis, leading to earlier treatment.
Nice of you say hello, and I hope you continue to post on this forum.
From my earlier chemo, which was ClVPP, a MOPP variant, I made a good recovery, but have had some ongoing problems. My digestive system never recovered fully, and I have endured IBS-type symptoms ever since. I have also had ongoing problems with fissures at the output end of the system - they can really hurt. For years now, my drs. have predicted thyroid problems, which have thankfully not emerged. Blood tests show thyroid function to be borderline at times, but so far it has always bounced back again. I do get episodes of tachycardia, but that is a recent thing, which I attribute to the R-ABVD. That seems to be settling down now though. This regime has hit me hard, but it's my second lot of chemo, and I'm 11 years older than the first time. Too early to say what the long-term effects will be.
I don't think the treament for HD has actually changed that much over the years. Radiation therapy is still standard for early stage, and bulky disease. ABVD is still the standard chemo, with the possible addition of rituximab. Now they inject people with something to stimulate white blood cell production, so infections are less of a problem. The really important factor is early detection and diagnosis, leading to earlier treatment.
Nice of you say hello, and I hope you continue to post on this forum.
REDD998
08-30-2008, 01:50 PM
Congratulations on the 19 year's.My Dad had Hodgkin's in or around 1990 but he would keep getting relapses every 6 month's or so for 5 years.Im 38 and I worried a little about me possibly getting Hodgkin's disease at some point in my life.But at age 30 I was blessed with stage 1 testicular cancer which didn't spread, and I don't worry about it too much anymore.I think my Dad was in the later stages of Hodgkins disease but he still lived almost 6 year's while being treated numerous times with Chemo.I talk to all the Doctors and they all say along with Testicular cancer Hodgkins is very curable.Strange thing is that my Dad was hardly ever sick when going through Hodgkins disease.You seemed to get it at a much earlier stage and you will beat it for good.
bran29
09-22-2008, 01:06 PM
Hello, I am a 21 year survivor of Hodgkins, I was so excited to find someone like me!! I Had stage 4, with a tumor in my chest cavity. I had Chemo and Radiation, I was 11 years old when diagnosed. I was fairly healthy for about 10years after my treatment, However the last 11 years have been rough ones. I have had a complete hysterectomy, Kidney stone disease, IC, I have recently learned that I have a faulty Valve in my heart, I have had nodules removed from my thyroid twice. I am home from work today due to illness, I have had alot of rough days latley. I get so aggerveted going to the doctor, everything is due to the chemo and radiation. I'm sorry for complaining so much, I am very thankfull for the life that I do have, and everyone going through this right now, Keep your head up...............
loumz01
10-25-2008, 04:38 PM
Nice to meet someone else that survived. I was dx'd with Large B cell Non Hodgekins Lymphoma on Halloween 07. I knew a month before that it was fast growing because it was in my neck on my thyroid.(unoperable) and growing really fast. I found the lump by accident because my throat was hurting and I pressed on the spot and swallowed and out popped a lump. Had three very aggressive all day long treatments and 20 treatments of rad and I'm cancer free as of 2/08 Mine was stage 1. miss Lou
Ultra8078
11-27-2008, 02:29 AM
Hi Everyone, I am a mom of a beutiful adult daughter who was diagnosed last week with Hodgkins. She will be starting chemo in January. Can you tell me what she will experience? Does chemo hurt or is it the side effects afterwards? She is in the early stage two.
REDD998
11-28-2008, 12:59 PM
Hi Everyone, I am a mom of a beutiful adult daughter who was diagnosed last week with Hodgkins. She will be starting chemo in January. Can you tell me what she will experience? Does chemo hurt or is it the side effects afterwards? She is in the early stage two.
Im a TC cancer survivor but my Dad had gotten Hodgkin's when he was about 50 in 1990.I can speak from expierence from my dad and myself that Chemo does not hurt.Also back in 1990 they didn't have the best anti nausea drugs that they have now.I went through Chemo in 2000 and didn't have any negative side affects except for hair loss.My Dad didn't have any negative side affects either in 1990. But, today the treatment is more advanced and Hodgkin's has a good cure rate.I think the worst part of the Chemo is mentally thinking about it.
Im a TC cancer survivor but my Dad had gotten Hodgkin's when he was about 50 in 1990.I can speak from expierence from my dad and myself that Chemo does not hurt.Also back in 1990 they didn't have the best anti nausea drugs that they have now.I went through Chemo in 2000 and didn't have any negative side affects except for hair loss.My Dad didn't have any negative side affects either in 1990. But, today the treatment is more advanced and Hodgkin's has a good cure rate.I think the worst part of the Chemo is mentally thinking about it.
Ultra8078
11-28-2008, 02:39 PM
Thank you for replying. I am very thankful for this site. I have so many questions and I appreciate all who take time to answer my questions.
singer78
11-29-2008, 03:27 PM
Hi Ultra,
I'm so sorry to hear of your daughter's diagnosis.
I, too, am a Hodgkin's survivor.
As of early December, it will be 1 year.
I was wondering, why are your daughter's doctor(s) are waiting until January to start chemo?
It must be a slow-progressing situation.
Best of luck,
Singer
I'm so sorry to hear of your daughter's diagnosis.
I, too, am a Hodgkin's survivor.
As of early December, it will be 1 year.
I was wondering, why are your daughter's doctor(s) are waiting until January to start chemo?
It must be a slow-progressing situation.
Best of luck,
Singer
Ultra8078
11-30-2008, 11:46 AM
Hi Singer,
My daughter decided to wait until January and finish up school and work one month before she started chemo. It must be her decision but I am concerned about the cancer. She said she needed time to accept that she has Hodgkins. It all happened so fast, she found the lump in June. We thought it was from using a telephone resting on her shoulder for eight years (She uses the phone alot for scheduling appts.) She went to the doctor in October eyes nose and throat specialist, and he drew blood and gave her antibiotics the lump went down 50% then she had a cat scan, then bone marrow biopsy, a pet scan and then the diagnosis of stage 2 Hodgkins.She needs to be on birth control before the chemo to help protect her in case she decides to have children. I don't understand how Hodgkins becomes present.
My daughter decided to wait until January and finish up school and work one month before she started chemo. It must be her decision but I am concerned about the cancer. She said she needed time to accept that she has Hodgkins. It all happened so fast, she found the lump in June. We thought it was from using a telephone resting on her shoulder for eight years (She uses the phone alot for scheduling appts.) She went to the doctor in October eyes nose and throat specialist, and he drew blood and gave her antibiotics the lump went down 50% then she had a cat scan, then bone marrow biopsy, a pet scan and then the diagnosis of stage 2 Hodgkins.She needs to be on birth control before the chemo to help protect her in case she decides to have children. I don't understand how Hodgkins becomes present.
singer78
12-01-2008, 12:35 AM
Hi,
Write down all the questions you and your daughter may have.
I used to go in with a legal pad full of questions.
It became "routine" with my Onc and me.
He'd come in, and reach for my legal pad of questions---and answer each & every one.
Anyway, you & your daughter should do the same.
If you're like me, you make "mental" notes, but they go "out the door," sometimes.
Again, I wish you & your daughter the best.
It's a very treatable disease.
Singer
Write down all the questions you and your daughter may have.
I used to go in with a legal pad full of questions.
It became "routine" with my Onc and me.
He'd come in, and reach for my legal pad of questions---and answer each & every one.
Anyway, you & your daughter should do the same.
If you're like me, you make "mental" notes, but they go "out the door," sometimes.
Again, I wish you & your daughter the best.
It's a very treatable disease.
Singer
daisyday
12-01-2008, 02:36 PM
Hi Singer,
My daughter decided to wait until January and finish up school and work one month before she started chemo. It must be her decision but I am concerned about the cancer. She said she needed time to accept that she has Hodgkins. It all happened so fast, she found the lump in June. We thought it was from using a telephone resting on her shoulder for eight years (She uses the phone alot for scheduling appts.) She went to the doctor in October eyes nose and throat specialist, and he drew blood and gave her antibiotics the lump went down 50% then she had a cat scan, then bone marrow biopsy, a pet scan and then the diagnosis of stage 2 Hodgkins.She needs to be on birth control before the chemo to help protect her in case she decides to have children. I don't understand how Hodgkins becomes present.
Hi Ultra,
How old is your daughter? I was diagnosed with IIA Hodgkin's when I was 16 - I'm now 29 and considered completely cured! If you or your daughter have any questions, I'm happy to help.
Take care,
Megan
My daughter decided to wait until January and finish up school and work one month before she started chemo. It must be her decision but I am concerned about the cancer. She said she needed time to accept that she has Hodgkins. It all happened so fast, she found the lump in June. We thought it was from using a telephone resting on her shoulder for eight years (She uses the phone alot for scheduling appts.) She went to the doctor in October eyes nose and throat specialist, and he drew blood and gave her antibiotics the lump went down 50% then she had a cat scan, then bone marrow biopsy, a pet scan and then the diagnosis of stage 2 Hodgkins.She needs to be on birth control before the chemo to help protect her in case she decides to have children. I don't understand how Hodgkins becomes present.
Hi Ultra,
How old is your daughter? I was diagnosed with IIA Hodgkin's when I was 16 - I'm now 29 and considered completely cured! If you or your daughter have any questions, I'm happy to help.
Take care,
Megan
Ultra8078
12-01-2008, 07:33 PM
My daughter is 26 and the light of my life she has always been such a sweet child never smoked, doesnt party reads goes out to dinner with friends works and goes to college. She is in stage 2 and wants to wait till January for chemo. In one way I wish she would start now in another way I dont want to see her suffer any sooner. It has to be her decision but I worry I know I must give it to God.