Hodgkins disease survivor

Luckyme39

bordersj said:

25-year survivor with late effects
Hi folks,
I just found this site today; can't believe I haven't looked for long-term survivor info online before as I'm online all the time. Here's my story.

Diagnosed with Hodgkin's (stage 2A I think - I'm not at home to look it up) in 1984 at age 27. Had 2 sessions of mantle radiation then. I moved twice after that so had to change doctors and when I moved to the Atlanta area in 1989, my new doctor immediately checked for thyroid damage after hearing my medical history. I've been on synthroid ever since.

In 1992, the Hodgkin's came back. No one knows why. Had chemo then - MOPPABV? - for 6 months and then a few weeks of follow-up radiation. All disease this time was on my left side with a large tumor under my left arm. I've been followed closely by my oncologist since then. I see him twice a year.

I requested a full medical checkup in the late 1990's and it was discovered I had a heart murmur and I was referred to a cardiologist to follow that which turned out to be lucky because in 2002 I started having some strange chest pains and ended up having a triple bypass. That surgery went well but immediately afterward I developed pleural effusions on both left and right sides but mostly on the left. For anyone who hasn't experienced this, this is a buildup of fluid in the pleural cavity between the rib cage and the lungs; the fluid presses on the lungs and eventually makes you very short of breath. Before we knew what it was, it got so bad I couldn't lay down cause I couldn't breath when I did. They do a procedure called a thorocentesis to take the fluid out by inserting a tube, guided by ultrasound, into your back to draw out the fluid so you can breath. After fighting this for about a year, gaining even more specialists, and being on and off prednisone for 7 months (which would stop it at a high enough dosage but I was starting to get diabetic), I had a thoracotomy with decortication and pleurodesis (surgery to clean out the pleural cavity and enduce scar tissue) on the left side. Enducing scar tissue buildup fills up the cavity and prevents the fluid buildup. After that surgery I developed gastroparesis (paralysis of the stomach) in which the stomach doesn't contract to digest food and was told I would have to live on liquids for the rest of my life. I had started having some digestive problems after the heart surgery so I had a GI doctor already who treated me for the gastroparesis with Reglan (which was horrible - caused depression and I requested a change) and then an IBS drug called Zelnorm. The gastroparesis was mostly gone after about 8 months but I still have days when I feel like I can't put much at a time in my stomach. On the positive side, this is a great weight loss plan ;-) I lost about 40-50 pounds, which I needed to lose, between the heart surgery and then the stomach problems.

After all this drama I was doing pretty well. Cardiac rehab helped build my stamina back up and I continued to exercise regularly, which I still try to do. I was feeling pretty good until the pleural effusion came back on the right side in 2005. I wasn't particular happy with my previous surgeon so I went to another one who said we wouldn't have to do surgery; we could do a chest tube pleurodesis. The pleurodesis process induces scar tissue by using chemicals to enduce scar tissue buildup so they put the chemicals in thru the chest tube. Yes, it hurts for awhile. This procedure went bad. I checked into the hospital on a Monday for the procedure but no doctors showed up. I learned that my surgeon's mother-in-law had died over the weekend, his physician's assistant aunt had died over the weekend, and they asked another doctor, who I had never met and who didn't know me, to do the procedure. I should have checked out and gone home and waited but I didn't. I haven't been able to breath right since. My lung capacity is so limited that I am on disability now. I think we should have done surgery. My first surgeon mentioned that there was substantial scar tissue on my left lung and it was very fragile. He had to do a lot of cleanup. I think if I'd had surgery on the right side, that side could have been cleaned up better. I was still draining fluid when the doctor put in the chemicals and I believe I have small pockets of fluid still in the right side. None of my doctors want to do surgery to clean up the right side as they don't believe it would change anything. I get very short of breath very fast under exertion - carrying in groceries, climbing stairs, walking fast, etc. Since this condition has been induced to prevent the fluid buildup, it will never go away.

I also have pulmonary hypertension, heart valve problems, and an aneurysm on the left side of my heart. My cardiologist thinks it will be my heart that eventually gets me but not for a long time. My condition is staying pretty stable for now.

I'm followed by oncology, cardiology, pulmonology, and GI on a regular basis. I also see my primary care doctor for minor problems, a gynecologist once a year (chemo sent me into early menopause), eye doctor, dermatologist. I think that's all. Thank God for good insurance!

I'm lucky financially in that I worked for a company with great benefits. I have health insurance through them still and I had disability insurance which replaces 75% of my salary after Social Security Disability insurance. My Social Security Disability was approved in two months as my lung capacity is below their guidelines for disability and I provided all my medical records for them when I applied so they didn't have to ask the doctor's for anything. That was almost 4 years ago.

I also have a great husband who has seen me through all of this. We don't have any kids so I haven't had to worry about those issues during all this.

Now I have other minor problems and I don't know if they're because I'm getting older (52 now) or if they're side effects of the radiation. The thing that bothers me most is my neck and back muscles which are always hard as a rock. I've developed some swallowing problems and they've recommended swallowing therapy but I haven't done that yet. They say my neck muscles have been effected by radiation and that effects my swallowing. I get massage therapy regularly which really helps my neck and back. I also see a chiropracter. My oncologist also says my neck and back muscles have been effected by radiation.

I found a really good site today at http://www.survivorshipguidelines.org/ that has guidelines for long-term cancer survivors. It was developed for child cancer survivors but is applicable to everyone who has long term effects. I think it would be helpful for anyone here.

Hope this helps someone. I've been very frustrated lately as I don't know what "normal" for me is and I've just started looking for other long-term survivor stories.

One major regrest is that I didn't get long-term care insurance when I could have. When I tried they asked for 5 years of medical info. I might have been able to get it at some point when I'd been stable for 5 years. So let this be a lesson.

Actually I feel very lucky. My health could be so much worse. I know I'm still at risk for other cancers and possibly other problems so it continues to be a wait and see game forever. But in the mean time I'll continue to live life as fully as I can!

Sorry this got so long but it's been a long story of continuous problems for the last seven years.... Hope this helps someone. Make sure you have regular check ups! I suspect there's no long term survivor out there that hasn't had some problem. I hope there's a doctor somewhere planning to publish on this subject.

JudyB.

39-year survivor

I had HL in 1973, and was treated with 12 weeks of radiation therapy to my neck, chest, and abdomen.  I had a staging laparotomy (basically, exploratory surgery from neck to pelvic bone, which they don't do anymore) with spleen removal, prior to RT.  As a result of the RT, I've had breast cancer with mastectomies and reconstruction in 1991 and 1998.  In other words, lots and lots of surgical and radiation insult to my upper body.   I have lymphedema in my left arm as a result of the modified radical mastectory and must wear a compression sleeve to control the swelling.  In 2009, I was hospitalized due to recurrent pleural effusion on the left side and had thoracotomy, chest tube placement, and chemical pleurodesis, which ended the pleural effusion.  While they were in there, they did a biopsy of some inflamed tissue in the left lung, and a pathologist concluded that it was malignant - metastasized breast cancer.   I was discharged with that diagnosis and told I could survive 3 to 5 years. When the oncologist who was preparing to treat my breast cancer requested additional testing on the biopsy sample, the same pathologist had to admit that he could not test the malignant cells, because there weren't any!  We sent the biopsy tissue to the Armed Forces lab in Washington for a second opinion, which confirmed that there was no actual malignancy.  Due to the time that's passed since that fiasco, it's obvious to all my medical providers that there was no malignancy, despite the unexplained pleural effusion, because I would have manifested some sign of it within a couple of years at the outside.  At this point, I haven't had any further effusions.  I have the usual cardiac issues - a mild mitral aortic stenosis and heart murmur.  I have some fibromyalgia in my chest area from all the nerve damage, some back problems, and some shortness of breath.  But all of these are nothing, weighed against the gift of life for nearly 40 years.  I'm 58, with a loving family, and relatively good health, if you consider the odds that were against it.

Which brings me to my reply to your post - you are the only other person I've ever heard of with an unexplained pleural effusion whose history similar to mine.  My radiation oncologist at University of Florida theorized that the pleural effusion was likely due to all the cumulative damage to my lymphatic system, beginning all the way back to the early spleen removal.  My oncologist has reviewed all the literature in the U.S. and found no other reported cases.  Has anybody else had a similar experience with pleural effusions?  Judy B, I really hope you're doing better now, and would love to hear from you.  Thank you for your post.

Luckyme39

bordersj said:

25-year survivor with late effects
Hi folks,
I just found this site today; can't believe I haven't looked for long-term survivor info online before as I'm online all the time. Here's my story.

Diagnosed with Hodgkin's (stage 2A I think - I'm not at home to look it up) in 1984 at age 27. Had 2 sessions of mantle radiation then. I moved twice after that so had to change doctors and when I moved to the Atlanta area in 1989, my new doctor immediately checked for thyroid damage after hearing my medical history. I've been on synthroid ever since.

In 1992, the Hodgkin's came back. No one knows why. Had chemo then - MOPPABV? - for 6 months and then a few weeks of follow-up radiation. All disease this time was on my left side with a large tumor under my left arm. I've been followed closely by my oncologist since then. I see him twice a year.

I requested a full medical checkup in the late 1990's and it was discovered I had a heart murmur and I was referred to a cardiologist to follow that which turned out to be lucky because in 2002 I started having some strange chest pains and ended up having a triple bypass. That surgery went well but immediately afterward I developed pleural effusions on both left and right sides but mostly on the left. For anyone who hasn't experienced this, this is a buildup of fluid in the pleural cavity between the rib cage and the lungs; the fluid presses on the lungs and eventually makes you very short of breath. Before we knew what it was, it got so bad I couldn't lay down cause I couldn't breath when I did. They do a procedure called a thorocentesis to take the fluid out by inserting a tube, guided by ultrasound, into your back to draw out the fluid so you can breath. After fighting this for about a year, gaining even more specialists, and being on and off prednisone for 7 months (which would stop it at a high enough dosage but I was starting to get diabetic), I had a thoracotomy with decortication and pleurodesis (surgery to clean out the pleural cavity and enduce scar tissue) on the left side. Enducing scar tissue buildup fills up the cavity and prevents the fluid buildup. After that surgery I developed gastroparesis (paralysis of the stomach) in which the stomach doesn't contract to digest food and was told I would have to live on liquids for the rest of my life. I had started having some digestive problems after the heart surgery so I had a GI doctor already who treated me for the gastroparesis with Reglan (which was horrible - caused depression and I requested a change) and then an IBS drug called Zelnorm. The gastroparesis was mostly gone after about 8 months but I still have days when I feel like I can't put much at a time in my stomach. On the positive side, this is a great weight loss plan ;-) I lost about 40-50 pounds, which I needed to lose, between the heart surgery and then the stomach problems.

After all this drama I was doing pretty well. Cardiac rehab helped build my stamina back up and I continued to exercise regularly, which I still try to do. I was feeling pretty good until the pleural effusion came back on the right side in 2005. I wasn't particular happy with my previous surgeon so I went to another one who said we wouldn't have to do surgery; we could do a chest tube pleurodesis. The pleurodesis process induces scar tissue by using chemicals to enduce scar tissue buildup so they put the chemicals in thru the chest tube. Yes, it hurts for awhile. This procedure went bad. I checked into the hospital on a Monday for the procedure but no doctors showed up. I learned that my surgeon's mother-in-law had died over the weekend, his physician's assistant aunt had died over the weekend, and they asked another doctor, who I had never met and who didn't know me, to do the procedure. I should have checked out and gone home and waited but I didn't. I haven't been able to breath right since. My lung capacity is so limited that I am on disability now. I think we should have done surgery. My first surgeon mentioned that there was substantial scar tissue on my left lung and it was very fragile. He had to do a lot of cleanup. I think if I'd had surgery on the right side, that side could have been cleaned up better. I was still draining fluid when the doctor put in the chemicals and I believe I have small pockets of fluid still in the right side. None of my doctors want to do surgery to clean up the right side as they don't believe it would change anything. I get very short of breath very fast under exertion - carrying in groceries, climbing stairs, walking fast, etc. Since this condition has been induced to prevent the fluid buildup, it will never go away.

I also have pulmonary hypertension, heart valve problems, and an aneurysm on the left side of my heart. My cardiologist thinks it will be my heart that eventually gets me but not for a long time. My condition is staying pretty stable for now.

I'm followed by oncology, cardiology, pulmonology, and GI on a regular basis. I also see my primary care doctor for minor problems, a gynecologist once a year (chemo sent me into early menopause), eye doctor, dermatologist. I think that's all. Thank God for good insurance!

I'm lucky financially in that I worked for a company with great benefits. I have health insurance through them still and I had disability insurance which replaces 75% of my salary after Social Security Disability insurance. My Social Security Disability was approved in two months as my lung capacity is below their guidelines for disability and I provided all my medical records for them when I applied so they didn't have to ask the doctor's for anything. That was almost 4 years ago.

I also have a great husband who has seen me through all of this. We don't have any kids so I haven't had to worry about those issues during all this.

Now I have other minor problems and I don't know if they're because I'm getting older (52 now) or if they're side effects of the radiation. The thing that bothers me most is my neck and back muscles which are always hard as a rock. I've developed some swallowing problems and they've recommended swallowing therapy but I haven't done that yet. They say my neck muscles have been effected by radiation and that effects my swallowing. I get massage therapy regularly which really helps my neck and back. I also see a chiropracter. My oncologist also says my neck and back muscles have been effected by radiation.

I found a really good site today at http://www.survivorshipguidelines.org/ that has guidelines for long-term cancer survivors. It was developed for child cancer survivors but is applicable to everyone who has long term effects. I think it would be helpful for anyone here.

Hope this helps someone. I've been very frustrated lately as I don't know what "normal" for me is and I've just started looking for other long-term survivor stories.

One major regrest is that I didn't get long-term care insurance when I could have. When I tried they asked for 5 years of medical info. I might have been able to get it at some point when I'd been stable for 5 years. So let this be a lesson.

Actually I feel very lucky. My health could be so much worse. I know I'm still at risk for other cancers and possibly other problems so it continues to be a wait and see game forever. But in the mean time I'll continue to live life as fully as I can!

Sorry this got so long but it's been a long story of continuous problems for the last seven years.... Hope this helps someone. Make sure you have regular check ups! I suspect there's no long term survivor out there that hasn't had some problem. I hope there's a doctor somewhere planning to publish on this subject.

JudyB.

Pleural effusions following treatment for HL

Has anyone else out there had pleural effusions after radiation treatment for Hodgkin's lymphoma?

Max Former Hodgkins Stage 3

tarheis said:

1991 treatment
I was treated in 1991 with MOPPABVD for stage 4A. I do have hearing loss didn't know if it was from the chemo or the radiation. The biggest problem I have is a chronic pain in my chest wall. It is there day and night and sometimes worse than others they tell me it is from the amt of radiation received? Anyone experience the same thing? I have tried various pain Dr's and can't get relief?

Hearing and ABVD

 

I did 12 infusions of abvd, and have read pretty extensively about all four drugs. I have never heard of any of them having any effects on hearing.  I have no idea regarding the radiation.

max

Max Former Hodgkins Stage 3

nehaGODHelps said:

Dear tarheis,


My mother also have lymphoma and doctor has given her ABVD 5 cycle rest of cycles are pending which need to be done,
About chest pain and all its all the chemotherapy treatment effect if u r getting ABVD here a medicne which is Adriamycin which basically caused of chest pain the same medicine combinatino found in the CHOP treatmant also.
about hair loo that becoz of chemotherapy.
my mother also is loosing her hair.

ALL the Best .
GOD BLESS YOU,


Thanks
Neha Arora

Long shot

Adriamycin causes heart muscle damage in less than 1% of users, so I would not automatically assume it is causing the pain without ruling out more likely causes.

Nearly 100 % of people recieving several doses of abvd will lose all hair, however.   I lost my eyelashes and eyebrows as well.

Max Former Hodgkins Stage 3

MichelleHenry said:

Neuropathy
I also have been effected with neuropathy. Do you have feeling back? How long did it take you? I can't even walk right and still really can't feel my lower legs (from my knees to my toes).

Michelle/Neuropathy

MichelleHenry,

I did 12 cycles of abvd four years ago, and got severe neuropathy also. I was numb from the knee down most of the time, and felt like I was walking on pegs. My hands were not as severe, but they were numb to the wrist, and I had a lot of trouble keyboarding, or turning pages in a book, etc.   My symptoms now (4 years later) are much milder, but I still have it significantly.  My doc and NP have told me that with it still present after four years, I most likely will have it forever.   I was part of a clinical trial for a cream to reduce symptoms, but the stuff did me no good at all, and after my trial was over, the RN in charge of the study locally said that she was not hearing good results from many people, so I suspect it failed the trials.  In abvd, VINBLASTINE is the drug that causes the neuropathy; in CHOP, it is the VINCRISTINE that causes it. The two drugs are very similiar, almost identical chemically, and in the way they work on cancer cells.

max

Max Former Hodgkins Stage 3

markwwxiii said:

stage 4
I was diagnosed with stage 4 Hodgkin's when I was 11, I am now 23. I'm glad to be here with people that went threw the same thing (or close to it) that I did.

Good Attitude

Mark,

I have a slogan that I use at the cancer center: "I'd rather have side-effects than have cancer."  

I agree with your view. The drugs saved my life. I can deal with some hardship and still give thanks.

max

Max Former Hodgkins Stage 3

MichelleHenry said:

YIKES!!!
I can't believe that you would tell everyone that it is slow growing and predictable. My doctor told me that it was not slow growing and that if I didn't get the chemo when I did then I would have been dead in a few months. And that was after the fact. Please, if you do have cancer check everything out, but not everyone has the luxury of choosing. I was one of the ones that didn't have a choice but to die.

Indolent

MichelleHenry,

The vast majority of lymphoma patients are in your boat (like me).  Almost always, it is a choice of take the meds, or call a funeral director. The drugs, in my opinion, are a blessing, and they are the only reason I am "above ground" today. 

max

Max Former Hodgkins Stage 3

cher26bear said:

I am a survivor of 17
I am a survivor of 17 years....35 years old...and yes, I am finding out that the treatment that saved my life is now proving to make my life difficult BUT, I am happy to be here!! I am married and have two beautiful boys and look to the future....going in Wednesday to talk about preventive breast removal..... a pain in the @!@ but what can you do!! I am educating myself the best I can. Thanks to all of you for your posts about your lives....it really gives me strength that I am not alone on this journey!!!

Wow

Bless you, Cher. I hae been clean four years now. You are a giant success story.

max

Alive and Kicking

Valjo06 said:

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.

Long term effect of RT

Valjo, I think we may be twins, I had HD in 1991 and I have frequently wondered about the effect of radiation on our bone tissue. I would be interested to know how many of us suffer from severe chronic pain especially in the spine.. if the scatter radiation rendered me infertile I can only imagine what other effects it had.
I have had stomach ulcers and the kidney that was not directly in the radiation field now has cycts on it...
Wow cassmike thank you for starting this discussion, I have no current issues with my hearing although I have do have chronic sinus problems ...hmmmm good to know what to watch for, I know about potential risks of other cancers but was not aware of many other things like heart problems...
Before 1980 most of us died so we are the first generation of long term survivors...I guess we have a lot to teach the Dr's and each other

cathyp

Alive and Kicking said:

Long term effect of RT

Valjo, I think we may be twins, I had HD in 1991 and I have frequently wondered about the effect of radiation on our bone tissue. I would be interested to know how many of us suffer from severe chronic pain especially in the spine.. if the scatter radiation rendered me infertile I can only imagine what other effects it had.
I have had stomach ulcers and the kidney that was not directly in the radiation field now has cycts on it...
Wow cassmike thank you for starting this discussion, I have no current issues with my hearing although I have do have chronic sinus problems ...hmmmm good to know what to watch for, I know about potential risks of other cancers but was not aware of many other things like heart problems...
Before 1980 most of us died so we are the first generation of long term survivors...I guess we have a lot to teach the Dr's and each other

Alive and Kicking

It may be helpful for you to print out the Survivor Guidelines found here:

http://www.survivorshipguidelines.org/

This is a good tool to share with your PCP to coordinated the testing that is suggested to monitor you for potential LT Effects from your treatment.  You may want to consider finding a LT Specialist to your team of doctors.  These doctors are amazing and are extremely knowledgeable when it comes to patients like us.

If you go to MSKCC website  you can read and see videos about their Adult Long Term Follow Up Clinic and also from Dr Michael Stubblefield, a physiatrist, who discusses Radiation Fibrosis Syndrome.  These videos can be found on youtube also.

Good Luck,

Cathy

HD 1989 - RADS   HD 1994 - ABVD   IDC - 2007 - DBL MX    Currently managing many LT Effects from treatment

 

bamalady1

Max Former Hodgkins Stage 3 said:

Good Attitude

Mark,

I have a slogan that I use at the cancer center: "I'd rather have side-effects than have cancer."  

I agree with your view. The drugs saved my life. I can deal with some hardship and still give thanks.

max

Good Attitude

I like that slogan you posted. That's a great way of putting it Max.

Julie

slessurb

no hearing loss

HD 1981 (19 years old).  full mantle, splenectomy

my chest radiation only came up to just below the ears/chin line, so i dont beleive it has affecte my hearing.

i have had 2 other cancers (schwanoma definitely related, renal carcinoma questionable)

heart damage to aortic valve and arteries.  going to need valve replacement

thyroid nodules, on synthroid forever.  

weight gain, drug/alcohol addiction (cant blame that on cancer or treatment)...25 years in recovery

 

 

inky hands

hodgkoid2003 said:

Late Effects Clinics
QRX,

You seem to be completely interior of the country as far as clinics that I am aware of. I know of one at the Mayo, Seattle, Stanford, Cleveland, Sloan Kettering in NYC, Children's Hospital of Phila, Duke in NC, Dana Farber in Boston. I have not heard of any near Colorado, but as a friend told me last year, don't ever let economics determine your treatments.

Back in the 80's, I was young and dumb. I didn't care about having kids, and certainly didn't think about the future, though I wanted to live and survive the beast. The exact words from my oncologist, were, "an increased chance of a secondary cancer such as leukemia or inflamation of the heart". That simple, that vague.

Last April, I was diagnosed with a "widowmaker". What was supposed to be a simple stint operation for a blockage, turned into an emergency double bypass as the cardiologist realized that it was not just plaque blocking the main artery to my heart.

So, after years of "living with my head in the clouds" (as the same friend put it), and not having follow-ups, I came across Sloan and met an awesome doctor there who has specialized in Hodkgin's, and its late effects. I had to obtain my treatment records and was mortified to find out that all my chemo records had been destroyed. My radiation records were still available. (Note to all, you want to make sure you have a copy of all your records). Anyway, he was able to figure out what amounts of chemo I had been given, but he had accurate record of my rads.

Today, I am on a regular schedule with him. I am still learning what has been done to me, and have a pretty good idea of what lies ahead. I know that I have more cardiac issues, pulmonary issues, spinal and shoulder. But given the "when not if" situation last year, I'll manange. Would I do anything different? No chance.

I do agree that there may be alternatives out there, but first, a person should really consider what works, and what is proven. Case in point, Hodgkin's while considered rare, still has one of the highest cure rates. And when a teenage boy makes national news, because a parent elects not to subject him to treatment, my heart sank. And it was proven what would happen to him, had they not changed their minds. I often refer to alternative choices okay as long as they are complimentary, which means you need to talk with your doc about the stuff, and more often than not, they are not open to those thoughts. Even now, though a statin drug is almost required for me, and other bypass patients, I have made the choice to refuse it, but that was only after a lot of proven research. I have 3 docs that I deal with, and all 3 are against that choice, but 2 out of the 3 are helping me to find some other method to control my cholesterol. And this is the difference.

Please visit any of those hospital web sites, and I'm sure that you can find answers to questions, that I think you might have.

Paul E. (Hodgkoid2003)

late affects clinics

Thank you for posting this.  I am going to check out the one in Dana Farber in Boston.  This topic has come to a head for me.  Thanks again

Lisa

Baltogrrl

cathyp said:

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

I am so glad I found this site

there is comfort seeing my story reflected in others stories and I appreciate the resources shared.  I am sorry each of you have had to endure this.

i am a 40 yr survivor of Hodgkins treated under the Kaplan protocol.  Since then I have lived a pretty good life however have had to slow down over the last 5 yrs as the physical affects of RFS have been catching up with me.

diagnosed at the age of 18 by a fluke- mandatory physical before entering college, IIIB 1974. Splenectomy followed by 5 days/wk mantal radiation 8 weeks literally up until the week before I left for college.  Since then thyroid cancer and removal 1981, basiloma 1983, lung cancer & lobectomy 2009, pericardial effusion 2011, cervical diskectomy at c3/4 and 4/5 2013.  Had originally been told dropped head/weak neck were due to muscles left un-reattached after thyroidectomy but now I know better.

through the postings on this site I have made an appointment in several weeks with Dr. Stubbelfield and will be flying in from N.California.  I am near 2 of the greatest medical institutions in the world.  However none of the physiatrists I have contacted nor physical therapists who are neck/shoulder specialists know anything about this.  Even my oncologist said there is no one doing this type of work at either of these institutions- quite sad.  If anyone has information to the contrary about resources in my area, please share them.

apologies in advance for auto completion mispellings as I am using my ipad.

lani4000

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

Hodgkins 1987

Was diagnosed in 87 stage II,  44 upper radiation treatments, 44 lower.  25 years later diagnosed with breast cancer, they feel it was caused by the radiation.  I had a double mascectomy, no radiation or chemo.  Now I am told I have coronary disease and vascular disease probably due to the radiation.  I wouldn't be alive today if not for those first radiation treatments, but I would like people to be aware of the things that can occur if you had those radiation treatments.

jiggerspub

lani4000 said:

Hodgkins 1987

Was diagnosed in 87 stage II,  44 upper radiation treatments, 44 lower.  25 years later diagnosed with breast cancer, they feel it was caused by the radiation.  I had a double mascectomy, no radiation or chemo.  Now I am told I have coronary disease and vascular disease probably due to the radiation.  I wouldn't be alive today if not for those first radiation treatments, but I would like people to be aware of the things that can occur if you had those radiation treatments.

long term side affects radiation

Hi I'm Kevin and i was diagnosed in 1987 stage 2b hodgkins disease. I had the typical staging laperotomy, spleenectomy, followed by MOPP and 47gy radiation. the side affects have a way ofcreeping up on you, mine have been a constant ringing in my ears, dead thyroid, extreme fatigue that never goes away, chemo brain, cognitive disorder, acid reflux and problems swallowing. Most recently 2011 i had a quintuple bypass open heart sugery and have pulminary pibrosis. My oncologist points to the radiation therapy as causing hardening and narrowing of the arteries. My heart surgeon said that my breast bone plate was likened to fiberglass and cleaned out lots of scar tissue. After bypass my lungs started giving me more problems with breathing in these cold michigan winters. It was also explained to me that the radiation NEVER leaves your body and can cause changes in your dna profile.

I hope this sheds light on some things related to long term radiation therapy. But I'm smiling alive and kickin **** still !!!

 Good luck to all of our fellow suvivors

jiggerspub

Max Former Hodgkins Stage 3 said:

Michelle/Neuropathy

MichelleHenry,

I did 12 cycles of abvd four years ago, and got severe neuropathy also. I was numb from the knee down most of the time, and felt like I was walking on pegs. My hands were not as severe, but they were numb to the wrist, and I had a lot of trouble keyboarding, or turning pages in a book, etc.   My symptoms now (4 years later) are much milder, but I still have it significantly.  My doc and NP have told me that with it still present after four years, I most likely will have it forever.   I was part of a clinical trial for a cream to reduce symptoms, but the stuff did me no good at all, and after my trial was over, the RN in charge of the study locally said that she was not hearing good results from many people, so I suspect it failed the trials.  In abvd, VINBLASTINE is the drug that causes the neuropathy; in CHOP, it is the VINCRISTINE that causes it. The two drugs are very similiar, almost identical chemically, and in the way they work on cancer cells.

max

Max i also have extreme

Max i also have extreme neuropathy. (hodgkins 2b 1987) I've had really good luck with neaurontin 300mg 4 times daily

Hopr this helps

jiggerspub

Max Former Hodgkins Stage 3 said:

Good Attitude

Mark,

I have a slogan that I use at the cancer center: "I'd rather have side-effects than have cancer."  

I agree with your view. The drugs saved my life. I can deal with some hardship and still give thanks.

max

(No subject)

AAS

Hey so I am two years cancer

Hey so I am two years cancer free. And I have had my power port out for over a year and I just still have terrible pains from where it was where sometimes I have to hold my chest because it hurts so bad. Has anyone experienced this. If you had is there some kind of medication that stops this because my oncologist said since I am active in sports to in can get worse. And it just ces to a point where I can't tolerate the pain anymore with breaking down sometimes. 

And I have Also experienced some nightmares and flashbacks from all of this and they said it is a slight case of PTSD . is there anything that helps those not come so much.?

 

mozza127

treatment damage

hi,hit wrong button ,i think chemo and radium effectts us as inderviduals,,i had hodgkins lymphoma ,neck,chest 30 years ago in august ,,always had a bad chest after treatments which have got worse over years now having muscle pain ,,heart burn ,stomach aches,back pain and joint pain ,last chest infection was unbearable ,had loads of tests and bloods and xrays ,seen oncoligist and had ct scan ,,,now being told i got treatment damage which i have never heard of any one else going through the same thanks mozza ,,kepp smiling