Hodgkins disease survivor

Unknown

cher26bear said:

Hi there!!
I too was
Hi there!!
I too was diagnosed with Hodgkin's disease when I was 17 and I am 35 now!! Have hypothyroidism and I am going to the doctor's wednesday to see if I can get my breast tissue taken out as a preventive. This will be the second year that they see images on the mammogram and I am sick of the biopsies....Sounds like we are at high rish for breast cancer..might as well act now....I get comprehensive thyroid tests every six weeks.....my doctor has no clue about our disease and it is very frustrating....knowing I have to talk to her wednesday should prove to be interesting!! Hope you are feeling better!
Sherry

This comment has been removed by the Moderator

Unknown

mbundgus said:

Hodgkin's
I was treated with Radiation and Chemo 45 years ago and no hearing loss -- Much of my neck was removed in the process and no hearing loss.

This comment has been removed by the Moderator

molly12

unknown said:

This comment has been removed by the Moderator

breast surgery after hodgkins
Hi Kay
I also had hodgkins treated by mantle in 1987. I live in the UK. I had one breast removed with cancer in 2005. I aksed for both removed but the surgeon would not. Last year I got DCIS so had the second removed and recon.Were you given the option of preventive surgery ?

Dorothy

Unknown

molly12 said:

breast surgery after hodgkins
Hi Kay
I also had hodgkins treated by mantle in 1987. I live in the UK. I had one breast removed with cancer in 2005. I aksed for both removed but the surgeon would not. Last year I got DCIS so had the second removed and recon.Were you given the option of preventive surgery ?

Dorothy

This comment has been removed by the Moderator

molly12

unknown said:

This comment has been removed by the Moderator

thanks for your help
Hi Kay
I am so pleased to hear from you. I only found out about the risk when I got breast cancer in 2005. I had been missed in the 2003 recall programme. I have constantly argued with my surgeon about the risk until I asked the Dept of health for the research document.By then I had already had the mastectomy.Last year when I got DCIS on the other side it was awful to have to see the breast surgeon again I was very angry. I was discharged from the breast clinic this year. I think he was glad to get rid of me. I am still with oncology but I wonder what will happen when they discharge me because the risks are still there.Your approach sounds very sensible.
Can we message off the forum ?

tmynes

cher26bear said:

Hi there!!
I too was
Hi there!!
I too was diagnosed with Hodgkin's disease when I was 17 and I am 35 now!! Have hypothyroidism and I am going to the doctor's wednesday to see if I can get my breast tissue taken out as a preventive. This will be the second year that they see images on the mammogram and I am sick of the biopsies....Sounds like we are at high rish for breast cancer..might as well act now....I get comprehensive thyroid tests every six weeks.....my doctor has no clue about our disease and it is very frustrating....knowing I have to talk to her wednesday should prove to be interesting!! Hope you are feeling better!
Sherry

breast cancer
Hello,

This is the first time I need to get more tests because of a screening realted to my mammogram. I have been cancer free for 32 years. The City of Hope noticed a lot of dense, fibrous tissue. Sounds like this has happened to you. Why so many biopsies?

Thank you,

Toni

tmynes

RichardW1 said:

30 years and still going
I was diagnosed when I was 13 years old back in 1979. I had a lump in my throat that was cutting off air to my lungs. Although it almost killed me because of fast growth it also had the desirable effect of forcing my diagnosis of Stage 2+. They almost took the spleen out but decided to radiate it instead. Treatment: 6 months MOPP, 30 days radiation, 6 month MOPP.

About 16 years later I had basal skin cancer. No problem it is harmless and it hasn't come back. Chemo left me with no fertility.

I see a cancer specialist in a long term clinic which is what I call "oncology break for doctors". At first the visits were to make sure I was in remission. Doctors were always apprehensive giving out info on what to expect. In the last few years they have been quite helpful.

In August they asked that I get tests for my heart. First step is to get a chorestoral blood test. If it is poor I'm to get a treadmill ECG. This works for me! I was told I had half the usual dose of radiation for the 1970s so I should be lucky.

I do have some shoulder tenseness and I crack my back often. Thanks to your writings I won't ignore and get checked out!!!

All in all I'm lucky all things considered and have a wonderful life so far. I wish everyone health and happiness!!!

Richard

BTW - I live in Canada and been watching the US health care debate. Enough said....

Wow,I had it in '79 also.
Wow,I had it in '79 also. Have you had a side-effects related to the radiation tratemnt?

Toni

tmynes

RichardW1 said:

30 years and still going
I was diagnosed when I was 13 years old back in 1979. I had a lump in my throat that was cutting off air to my lungs. Although it almost killed me because of fast growth it also had the desirable effect of forcing my diagnosis of Stage 2+. They almost took the spleen out but decided to radiate it instead. Treatment: 6 months MOPP, 30 days radiation, 6 month MOPP.

About 16 years later I had basal skin cancer. No problem it is harmless and it hasn't come back. Chemo left me with no fertility.

I see a cancer specialist in a long term clinic which is what I call "oncology break for doctors". At first the visits were to make sure I was in remission. Doctors were always apprehensive giving out info on what to expect. In the last few years they have been quite helpful.

In August they asked that I get tests for my heart. First step is to get a chorestoral blood test. If it is poor I'm to get a treadmill ECG. This works for me! I was told I had half the usual dose of radiation for the 1970s so I should be lucky.

I do have some shoulder tenseness and I crack my back often. Thanks to your writings I won't ignore and get checked out!!!

All in all I'm lucky all things considered and have a wonderful life so far. I wish everyone health and happiness!!!

Richard

BTW - I live in Canada and been watching the US health care debate. Enough said....

Wow,I had it in '79 also.
Wow,I had it in '79 also. Have you had a side-effects related to the radiation treatemnt?

Toni

molly12

tmynes said:

breast cancer
Hello,

This is the first time I need to get more tests because of a screening realted to my mammogram. I have been cancer free for 32 years. The City of Hope noticed a lot of dense, fibrous tissue. Sounds like this has happened to you. Why so many biopsies?

Thank you,

Toni

biopsies
Hi Toni

I suppose each time something turns up on a mammogram they have to biopsy it to see if its breast cancer or not.I imagine this is why some people prefer preventive mastectomy. Last year when I had DCIS I had to have core biopsy. Even though it was not yet cancer because it could change I had a mastectomy obviously because I could'nt have radiation. Did you have mantle radiotherapy for HD years ago. I am glad that things have been good for you. The whole thing is such a strain.
How are you now ?

Dorothy

mtiberio

bbbdirector said:

Mantle radiotheraphy - COBRA
To Molly12

I understand. I am grateful to have gotten through the Hodgkins; however, if I had known about these side effects (mainly aortic stenosis) I am sure I would have prepared better. I had to leave work last year. I was approved for SSDI; however, it is not quite enough to live comfortably on - plus I am having to pay for COBRA out of that because Medicaid informed me that my income was $20 over the limit. So I am now paying COBRA payments - because I am afraid to NOT have health isurance. I got excited when I heard about the recent COBRA subsidy; however, the benefits included persons who were terminated from their job on September 1, 2008 and I was terminated August 31, 2008!!!!

I found out that I am not eligible to get Medicare until next September 2010 (2 years on SSDI).

Did you find out anything about 'has anyone ever looked at compensation?' Please reply to me at bbbdirector@yahoo.com. Thanks

What radiation has done to me
Interesting web site.

I had Hodgkins in my neck when I was 17 (1972, now 55, so 38 years ago).

I had radiation. 200 rems per day for 19 days (3800 total), mid chest to base of skull. In case your wondering, 800 rems whole body in one dose is enough to kill you.

They did a destructive inspection on my spleen and a general exploratory (no cancer down south).

I now have:
underworking thyroid, on thyroid pills for life

fibrosis around the edges of my lungs (where they didn't use plates of lead to protect me), no treatments, yet

I had a massive heart murmur due to calcification (aortic stenosis), 13 weeks ago I had a pig valve installed, and a triple bypass. Doc says there was more calcification in there than he expected.

I an experiencing some hearing loss, and I'm wondering if it isn't radiation induced.

I have general weakness of the bones and muscles in my upper chest. I have broken many ribs and collarbones racing motorcycles. Feel like my neck is arthritic, and have muscle spasms in my upper back often. Also had rotator cuff surgery, and I have a torn bicep tendon. Don't know how much of this I can blame on radiation.

Glad to be alive, but it's tough sometimes to maintain gratitude.

Thanks,
Mike

Notramona

Fran-HD said:

Hodgkins in 1980
I had hodgkins in 1980 at the age of 17 and a senior in high school. I now feel like I had cancer in the stone age compared with the new treatments available. I have been plagued with several long term effects of radiation. My chest to the top of my neck was radiated. I found out 5 years ago that I had pulmonary fibrosis from radiation leaving me with 75 % lung capacity. I have been able to manage that with asthma based medicines and breathing treatments. Over the past 3 years I have had to deal with acid reflux. Recently it has been worse and the GI doc recommended fundoplication surgery but come to find out they are saying due to radiation that the surgery is really not an option because the tissue is considered unhealthy/damaged due to radiation from 30 years ago. Has anyone else run across long term affects of radiation or know where I can find more information about these long term health issues associated with the radiation. Thanks

Me too
I was treated in 1996 and 98 with abvd and radiation, then high dose chemo and a stem cell transplant. I have scar tissue in my lungs too. I am told nothing can be done. But at least we are here!!!

Notramona

dpomroy said:

Yes, to all of the
Yes, to all of the above:
thyroid problems due to radiation of the neck
lung damage due to high dose chemo and radiation
early menopause because of treatments
neuropathy, yes
panic attacks, yes
dry skin
hearing loss
protein spilling disease of the kidneys
who knows what else

But
I
am still
ALIVE!
and kicking!

Are you my twin!!!!! Did
Are you my twin!!!!! Did you have a stem cell transplant?

Ginger Snap

awgarner said:

hypothyroidism
I am a 17 year survivor of 2a Hodgkin's and received MOPP and mantle radiation. I have experienced some of the late effects such as difficulty swallowing, pain in neck and shoulders and lung damage. I also had a prophylactic double mastectomy in 2005 because of the increased risk of breast cancer--since I was diagnosed when I was 17. I've taken synthroid for years, but now I am so exhausted all the time. I have read alot about t3 and t4 levels when testing thyroid function. Does anyone get comprehensive thyroid testing including t3 tests. Also, is there anything I can do for the decreased lung function? My late effects doctor just blows me off when I ask.

DON"T BE SILENCED!!27yrs. in remission from hodgkins
Hi. I'm a 40 surviving female from IA nodular sclerosing hodgkins. I've been in remission now for 27 yrs. I was 13 when diagnosed. Things moved so fast it's hard sometime to recall what happened. I also have had Mutiple things going on. Been on Synthroid since I was 14. I have been fortunate to have found an excellant dr. in which her sister has has hodgkins also so she is aware of what to look for. I'm also treated for a pituitary growth which is auto-immune.My liver is about 5 x's the size that it should be ... which has been found also to be auto-immune. I'm seen every 3 mo. for the throid problem.They have recently had to put me on prednisone for my lungs..40 mg. ouch. I hate that stuff. I have seen every dr. imaginable; cancer,endocrine,rhematology,hepatology,gi specialists,neurology, & of course my family dr. oh I also have gone to the Mayo Clinic in MN. for my liver diagnoses with PBC. witch is also auto-immune. Yesterday I seen A rhematologist for auto immune stuff. He stated that everything that I was dealing with is from cancer treat. & I'm gonna have to live with. And also stated that I should get genetic testing which I'm currently looking into & gonna go back to Mayo I think for that. I have had many problens creep up in the last couple yrs. Lungs have gotten real bad after a bout with the H1N1 flu in 11-2009. my peak flows are only at 200-250. I'm on steroid inhalers & nebulizers(on bad days) .
Sorry this is long & drawn out , but the fact of the matter is that if you have had Hodgkins, these are the fun after affects of treatment that I have just found out more about.
As far as your throid goes I've been pretty well informed on this disease. It can get VERY complicated also. A couple yrs ago , my tsh was at 35. I was almost not breathing. & this other dr that I was trying at the time had me OD-ing by about 4 times. My whole system crashed!!!! & it took a yr. for my endocrine dr. to straighten it out.
Have they checked your throid antibodies? pitutary function?adrenal glands?ANA?
Don't let the dr's blow u off!! I've been doing this dr. thing a long time . It's too bad that alot are just out for the$$ & not the patient. You need to be your own dr. Keep a daily diary of symptoms ,see if there is a pattern. These Dr's work for YOU!!! Don't be a ### Be a person !! &&& REMIND Them that you are a person! A good book to check out is MARY SHOMAN(Living Well With Hypothyroidism)(Thyroid Sourcebook) by Sara Rosenthal. These are 2 very informative books. And Wish the best of luck for you, And GOD BLESS!!
Ginger

QRX

HBOT therapy
Has anyone here tried HBOT (hyperbaric oxygen therapy) for late effects of radiation and chemo?

allmost60

QRX said:

HBOT therapy
Has anyone here tried HBOT (hyperbaric oxygen therapy) for late effects of radiation and chemo?

HBOT
Hi,
If you type in hyperbaric oxygen therapy in the Search CSN content..(upper right hand corner of page), you will see a ton of discussion from other cancer patients....(CSN members) on this topic. When ever I have a question, such as yours, that is the first thing I do and it's amazing the wealth of information you can review. Hope this helps.
Best wishes...Sue (FNHL-2-3A-6/10)

nursejenn4

allmost60 said:

HBOT
Hi,
If you type in hyperbaric oxygen therapy in the Search CSN content..(upper right hand corner of page), you will see a ton of discussion from other cancer patients....(CSN members) on this topic. When ever I have a question, such as yours, that is the first thing I do and it's amazing the wealth of information you can review. Hope this helps.
Best wishes...Sue (FNHL-2-3A-6/10)

Hodgkins Lymphoma in 1999/2000
Hi There

I had Hodgkins in 1999/2000 - I was stage 2B advanced. I am now almost 27. I just did 9 months of high dose chemo - no radiation.
Now I suffered with horrible depression/anxiety. Anyone else in that boat?

Jenn

Old Vet

I am a 34 year survivor. I
I am a 34 year survivor. I was 27 years old married with 2 children when I noticed a lump in my neck and I was diagnosed with stage 3 Hodgkins. I was given a short time to live so I underwent exploratory surgery where they removed my spleen and lumps from my neck to my groin area. One large growth behind my heart was not removed but dissolved through experimental chemotherapy which I agreed to take. Some of my long term effects have been issues with my teeth and an enlarged heart. After completing 9 months of chemotherapy and a blood transfusion they recommended radiation therapy which I refused. After reading some of the long term effects of radiation I am so glad that I did. I have not suffered some of the long term effects that have been described in the comments I have viewed.
I believe in a positive attitude and keeping your mind/body active. During my treatment I was building my home as well as working as a full time miner. I feel that this activity kept my mind off of the hell that I was going through. In the past 34 years I have come to appreciate each day I have been given and live each day like there is no tomorrow.
I am now 63 years old, I have regular medical checkups and I am healthy and cancer free. I spend 5 days a week at a gym to stay active and health now that I am retired.
I am interested in knowing if there is anyone out there that is a Hodgkins survivor longer than me. I believe you can beat cancer and live a great life. God bless all of you.

berean

Old Vet said:

I am a 34 year survivor. I
I am a 34 year survivor. I was 27 years old married with 2 children when I noticed a lump in my neck and I was diagnosed with stage 3 Hodgkins. I was given a short time to live so I underwent exploratory surgery where they removed my spleen and lumps from my neck to my groin area. One large growth behind my heart was not removed but dissolved through experimental chemotherapy which I agreed to take. Some of my long term effects have been issues with my teeth and an enlarged heart. After completing 9 months of chemotherapy and a blood transfusion they recommended radiation therapy which I refused. After reading some of the long term effects of radiation I am so glad that I did. I have not suffered some of the long term effects that have been described in the comments I have viewed.
I believe in a positive attitude and keeping your mind/body active. During my treatment I was building my home as well as working as a full time miner. I feel that this activity kept my mind off of the hell that I was going through. In the past 34 years I have come to appreciate each day I have been given and live each day like there is no tomorrow.
I am now 63 years old, I have regular medical checkups and I am healthy and cancer free. I spend 5 days a week at a gym to stay active and health now that I am retired.
I am interested in knowing if there is anyone out there that is a Hodgkins survivor longer than me. I believe you can beat cancer and live a great life. God bless all of you.

35 year survivor
This is the first time I have visited this site. I couldn't believe I found someone in my shoes! I was diagnosed in 12-76. I was 21 and a newlywed. I am now 56. I lived a relatively healthy life until 10 years ago. Now I seem to have health problems more often. I have had pleural effusion(fluid in the lining of the lung) 3 times. I currently am being treated for it. The dr's are stumped as to why this has occurred. Does anyone out there know of doctors who are familiar with long ago treatments and their long term side effect? How would I go about finding one?

cathyp

berean said:

35 year survivor
This is the first time I have visited this site. I couldn't believe I found someone in my shoes! I was diagnosed in 12-76. I was 21 and a newlywed. I am now 56. I lived a relatively healthy life until 10 years ago. Now I seem to have health problems more often. I have had pleural effusion(fluid in the lining of the lung) 3 times. I currently am being treated for it. The dr's are stumped as to why this has occurred. Does anyone out there know of doctors who are familiar with long ago treatments and their long term side effect? How would I go about finding one?

Long Term Effect Specialists
I currently see a LT Effect Specialist at MSKCC in NYC. I had HL in 1989 and 1994. Was dx'd with IDC in 2007, an effect from the radiation tx's. Keeping on top of all the other problems from the rads and chemo such as thyroid, lungs and cardiac. I'll send you a private message telling you about a web site that will have the resources you are looking for.

Cathy

Valjo06

Fran-HD said:

Hodgkins in 1980
I had hodgkins in 1980 at the age of 17 and a senior in high school. I now feel like I had cancer in the stone age compared with the new treatments available. I have been plagued with several long term effects of radiation. My chest to the top of my neck was radiated. I found out 5 years ago that I had pulmonary fibrosis from radiation leaving me with 75 % lung capacity. I have been able to manage that with asthma based medicines and breathing treatments. Over the past 3 years I have had to deal with acid reflux. Recently it has been worse and the GI doc recommended fundoplication surgery but come to find out they are saying due to radiation that the surgery is really not an option because the tissue is considered unhealthy/damaged due to radiation from 30 years ago. Has anyone else run across long term affects of radiation or know where I can find more information about these long term health issues associated with the radiation. Thanks

Long term issues from radiation
Hi Fran. I was had Hodgkins in 1980 and was radiated for four weeks/5 days week from neck to chest, then 3 weeks off, then they decided for precautionary measures to radiate my stomach and pelvic area. I have many issues such as neuropathy, sharp pains that shoot thru all areas of my body now and then, Acid reflux and alot of other stuff. I have spoken to many doctors and I've done alot of research recently on the web. Doctors are telling me that they are now seeing damage appear years later, you either see it immediately or years down the road. I ended up having spinal fusion after 7 years of telling doctors something was wrong. I had a broken vertebra, it took them 7 years to find. They're thinking that the fracture was so thin and barely noticeable, that until the disc completely rubbed away and the vertebra was hanging on top of the other one, is when it was found. I'm just so happy I lived thru the cancer and radiation (which was all I was offered back then). I just wanted to tell you you're not alone. I keep pusing on for answers and in fact am going to pain mgmt doc who is working with me on the back pain. It's amazing searching the web to find out what symptoms alot of others are having from this years ago. I will keep you posted if I learn more and please do so the same for me. Take care. Enjoy your day.