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Hodgkins disease survivor

cassmike
Posts: 13
Joined: Jul 2005

I was diagnosed with stage 11B with hodgkins in 1991. I was given a little over three months of radiation treatment in my neck and mantle. This past year I have severe hearing loss in my left ear, same side i was radiated on. My oncologist thinks it is a result from the treatment. Has anyone else had this problem?

jrgoy036
Posts: 2
Joined: Jan 2008

I went through radation therapy for Hodgkin's Lymphoma and my hearing has definitely become worse.

cassmike
Posts: 13
Joined: Jul 2005

I am sorry to hear that. Did they radiate your neck? Have you had a hearing test? It is hard to adjust to but I it is a small price to pay. Hearing loss, thyroid, and some skin stuff has appeared so far. I hope nothing more. I hope you are doing well.

gailygail
Posts: 4
Joined: Feb 2008

I hope you are doing well, cassmike. I am in remission one year as of January 2008. I had hodgkins, mass under my breastbone. I had chemo & rad. I have had no hearing loss. I have developed neuropathy in feet & hands in the past 2 months and still get shooting pains in middle of my chest ever so often. I am alive to tell the story, I can deal with this. thinking of you with hugs, Gailygail

bethmad
Posts: 1
Joined: Aug 2008

I had Hodgkins in 1982 and was treated with radiation for 8 weeks, 5 days a week (I was stage IIA), but at the time they did full mantle radiation. It was the old days and the radiation was pretty generalized. Anyway only recently I've been thinking of getting my hearing checked. Prior to this I haven't had hearing problems, and even now I hear pretty well.

sandybe
Posts: 40
Joined: Aug 2008

I also had full mantle and neck radiation for Hodgkins. My last treatment was July 4, 2008. I have not noticed any problems with my hearing so far. Did anyone have problems with skin pain? The burns have healed on the outside but it still feels like it is burnt. Any kind of pressure whatsoever on my back feels like I still have a bad burn.

april.mcclain
Posts: 2
Joined: Sep 2008

I was diagnosed with stage 2B Hodgkin's in December of 2000 at the age of 18. I had a cancerous mass the size of a grapefruit behind my chest wall. I did 6 months of chemotherapy followed by 24 treatments of radiation. I have, thus far, not had any long term effects. My oncologist sees me every 4 months and does blood work at each visit. Additionally he keeps a very close eye on my thyroid. I did have short term effects while I was undergoing radiation treatment... I lost the hair on the back of my head... you could see exactly where the radiation stopped... an intolerable sore throat that only lasted about 5 days, in which I had to take medication to numb my throat in order to even eat soup and drink anything... and I had a weird skin reaction... almost like a burn but not really.. it looked like I had little black dots all over my chest and back. Other than that I didn't have any other noticable problems. Hope you all are doing well. I'm happy to be here! :)

Fran-HD
Posts: 12
Joined: Mar 2009

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

Notramona
Posts: 2
Joined: Sep 2010

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!!!

Valjo06
Posts: 16
Joined: Nov 2011

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.

Alive and Kicking's picture
Alive and Kicking
Posts: 5
Joined: Feb 2013

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's picture
cathyp
Posts: 366
Joined: Dec 2009

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

 

ERIC 60
Posts: 4
Joined: Nov 2009

Hi,

I had Radiation in 1982 for HD also 8 weeks. There also took my spleen out for staging.

Just this past month they found a mass in my groin and other areas. Said it has probably been there for some years.

After 27 years I though I was in the clear.

tarheis
Posts: 4
Joined: Apr 2007

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?

nehaGODHelps
Posts: 2
Joined: Dec 2009

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.

Please feel free to contact at my mail id neha.iftm@gmail.com
ALL the Best .
GOD BLESS YOU,

Thanks
Neha Arora

nehaGODHelps
Posts: 2
Joined: Dec 2009

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

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's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

 

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

laurlea
Posts: 1
Joined: Feb 2004

I was diagnosed in 1989 with Hodgkins Stage 2B. I had chemo, mantle radiation, bone marrow harvesting. The only side effect I have is neuropathy in my feet. So far so good! Any with a recurrence of leukemia or breast cancer?

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

For anyone having radiation over the abs years ago - get a colonoscopy. I had treatment 1988 and recently had colon cancer. They think the rads may have played a part. Now NED thank goodness. Lance

MichelleHenry's picture
MichelleHenry
Posts: 11
Joined: May 2009

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).

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

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

TexasCobra
Posts: 1
Joined: Jan 2009

I've not lost any hearing, but my thyroid is not functioning as advertised. My doctor thinks it may be caused by the radiation I had for my Hodgkins...12 treatments of ABVD and 5 weeks of radiation. Other problems are scaring of my lung tissue and decreased lung capabilities...also possible caused from the treatments. More later...

Peter G
Posts: 5
Joined: Feb 2009

I had full mantle radiation in the summer of 2003 to treat Stage I Hodgkins. No problems with hearing to report, but I can definitely say my lungs were pretty fried. I have also had a lot of heartburn problems and my throat gets really easily irritated. I used to love spicy foods, but I can't do them anymore.

Peter G
Posts: 5
Joined: Feb 2009

I had full mantle radiation in the summer of 2003 to treat Stage I Hodgkins. No problems with hearing to report, but I can definitely say my lungs were pretty fried. I have also had a lot of heartburn problems and my throat gets really easily irritated. I used to love spicy foods, but I can't do them anymore.

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

I have tinnitus and a small loss of hearing in my left ear. Getting this looked into and will have an MRI in a couple of months. Not sure if it is from Radiation done 20 years ago but I guess we shall see.
Lance

markwwxiii's picture
markwwxiii
Posts: 7
Joined: Mar 2009

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

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

bamalady1's picture
bamalady1
Posts: 3
Joined: Jan 2013

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

Julie

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Lance,

One of the things that I recently went over with during my visit to my "late effects" specialist, was the fact that I haven't had my eyes or ears checked in who knows how long. And these were things that they definitely told me were important to do, as they could be affected by radiation.

Paul E. (Hodgkoid2003)

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

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!

birdgray
Posts: 8
Joined: Sep 2009

Hi Im a 22yr survivor from 3A NS Hodgkins, I had my spleen removed and had total lymph node radiation including liver (18 wks total). I have all the above thyroid, lung, heart, neuropathy, dry skin, I drink water like a fish im sure my inside are just as dry, ringing in the ears, they tell me my spine is deteriorating, pain in back and legs,yes you name it. But what I dont see is balance on anyones list of things. I have been past from doctor to doctor and Im tired of the end result. "ITS BECAUSE OF THE RADIATION" . I am having trouble with balance, I would never pass a sobriety test, and I don't drink. LOL
Yes I am thankful for each day given, if anyone has balance problems let me know

blessed09
Posts: 2
Joined: Oct 2009

Hi-
I never thought about it before, but I do have balance issues. I never thought that it was do to having Hodgkin's disease when I was 16, I'm 42 now. I can be very clumsy and run into things. A few times, I just fell for no apparent reason. I started thinking i had some other disease, like M.S. or something. The other issues that I've had are thyroid,heart,bladder, stomach and teeth. I wish I knew then, what I know now of the disease Hodgkin's. I never got the medical records of the time I had it, so I'm not sure of the extent of it, except that it was stage 2 and my neck and chest were radiated. God bless you in your own journey and thanks for mentioning the balance issues.

birdgray
Posts: 8
Joined: Sep 2009

Sorry you were never able to receive your records; you were so young I couldn’t imagine how scared you were when they told you had cancer. I was in my early twenties and had two young boys; I remember it like it was yesterday. I never placed the balance to Hodgkin’s before I thought I was crazy or something. At least that’s how the doctors made me feel. I fell a few times, I drop things and when I told the doctor how I was feeling like something was wrong and I don’t know what. He said, “Are you sure you just aren’t depressed” I have learned to live with it, until now. I can’t walk a straight line; I feel like I’m falling more often and it scares the heck out of me. I just sent my test to the Oncologist who treated me 22yrs ago he has offered to look them over. It I find out something I will post it, together we can make a difference together we all know we have something in common together we can make the doctors listen.

thanks for the post
Bird

Debbie Lou
Posts: 14
Joined: Nov 2009

I am 15 years post treatment and have had balance problems for years always blamed chemo but didn't really know for sure . I have several issues that I have read about on this sight and have been to several Dr's (speciaists ) about them and when I ask if it could have been from chemo they say no it is stress you need a shrink. I have been thinking I'm crazy( so has my family). When I started reading about these things I cried because I realized I'm not crazy afterall and finally i know there are people out there that understand what I feel like. The chemo brain I knew nothing about it I just thought I was stupid or something.

Notramona
Posts: 2
Joined: Sep 2010

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

crayson
Posts: 2
Joined: May 2009

I was diagnosed with Stage III with B symptoms and I have had ear loss in my left ear. Mild, but enough to be annoying. It seems the doctors just kind of turn off listening when I have complaints. I only had this in March 2007.

midwest-mom
Posts: 3
Joined: May 2009

crayson,

I was diagnosed with stage 4 in June of 2007, I have been in remission for 15 months now! I also find that the doctors don't always take my complaints seriously and find that they just tell me that I should be happy to be alive. I am and I don't want to be sick anymore either. my best advice is to keep talking to the doctors, I told my doctor that he works for me, My payments provide his life style....So when I say I feel a lump or I have some lymphadema in my arm he checks it out because I am taking controll of my medical care. Be pro-active and do your homework before you talk to them.
Good Luck

rcourville
Posts: 3
Joined: Jun 2009

i have been in remission for 9yrs. In 1996, i had radiation therapy to my chest which destroyed my thyroid. I also had chemo (ABVD), i relapsed and had a ABMT in 2000. No problems since :)

HD_Mickey
Posts: 2
Joined: Jun 2009

I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (dyspneic, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

Thank you and kind regards
Mickey

bordersj
Posts: 1
Joined: Jun 2009

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.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Judy B.,

I can relate to many of what you wrote. My bio states pretty much what I've gone through. I've found that the ACOR site (www.acor.org) is a very informative site for us long term survivors. One of the things that you'd find there, is a lot of info in regards to finding a "late effects" clinic, in other words, doctors who specialize in helping many of us deal with the late effects from our treatments.

The thing you mention with the neck, is something that I'm dealing with. Also felt that it is caused by radiatioin, it was explained to me, that the muscles in my neck have deteriorated, leaving the muscles in the front alone (for whatever reason). This results in my head being "pulled" forward (it looks like I'm always sulking), unless I happen to catch myself in this position. Sometimes it is referred to as "drooping head syndrome". Dr. Stubblefield and Dr. Oeffinger at Sloan Kettering in NYC introduced me to this. There is also some noticeable decrease in muscle in my shoulders.

With my double CABG though last year, I'd say that the focus on my heart overrules all the other stuff that I am dealing with. I actually go for my first annual cardio follow-up in two weeks.

Sorry to see that you have had so many other issues, but am glad to see that you beat the beast 25 years.

Paul E. (Hodgkoid2003)

rcourville
Posts: 3
Joined: Jun 2009

yesterday someone asked me if I was stretching my neck. I catch myself doing
that frequently. I thought it was from stress-hahaha.
I am a 9 year survivor of Hodgkins Lymphoma. The first time I was diagnosed, I had radiation treatment to my neck and chest; which resulted in hypothyroidism, but thats another story.
I find the term " drooping neck syndrome" very interesting. I have never heard of it before.

Luckyme39
Posts: 3
Joined: Feb 2013

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
Posts: 3
Joined: Feb 2013

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

QRX
Posts: 3
Joined: Jun 2009

Thanks a million everyone for posting this stuff. It is good to find people who have been through the same thing.

I was diagnosed with stage I-IIA Hodgkin's back in 1993, 16 years ago. Two things that I did right: refused all chemo and refused to let the butchers take my spleen. Then I stupidly agreed to take upper mantle radiation (40Gy). The radiation was an indescribably horrible experience. Coughing up blood, sore throat, exhaustion, nose bleeds, severe weight loss. Far worse than the disease, which my body had been keeping in check by itself.

Now, years later, the skin in the irradiated area is sensitive to the point where I have to watch water temperature when taking a shower. To the rest of my body, water feels fine, but to neck and shoulders, it burns. Have to watch that. Had a few really bad cases of pneumonia over the years, caused by lung damage. Maybe some hearing damage. A few years ago started getting wondering about hearing my left ear. Occasionally it would kind of fade out, or turn into a high pitch, then a few minutes later it would come back. Changed my diet, lost 20 lbs., and hearing got a lot better.

Hair on back of head and neck has never fully grown back, and it looks and feels terrible. I avoid touching my neck. No thyroid problems yet, but I keep an eye on it. Occasionally I get slight tingling in feet and hands, and I wonder if it could be caused by neuropathy. Have had many dental problems, too. Lower jaw is just not the same. Lots and lots of cavities and lost a few molars. My sense of taste is not quite the same as it was prior to radiation.

To anyone out there recently diagnosed with Hodgkin's, my advice is REFUSE radiation! Just walk away. Explore every alternative treatment before restorting to radiation or chemo. Read about pleomorphic bacteria and consider antibiotic therapy. Take Essiac. Supplement with D3. Try Macrobiotics. You have plenty of time. Hodgkin's grows slowly and spreads in a very predictiable way, so you are not loosing anything by taking time to educate yourself and explore alternatives. If you decide to take radiation, make sure it is involved-field radiation only, and less than 25Gy. You will be much happier later, believe me.

Sorry, but I am definitely not happy with these results. Radiation is a very harsh, disabling, disfiguring, and crude way to treat this disease. I would give anything to undo this damage, even if it means having the disease back. I guess I am bitter about this. I am angry at the arrogant doctors and nurses who treated me. May God damn them to hell. Or better yet, may God damn them to 5 weeks of radiation treatments.

I would love to find some kind of treatment for these late effects, and I'm looking into hyperbaric oxygen therapy (HBOT). It is used for lower jaw problems, and may be useful for other radiation effects. Does anyone have any information on HBOT? Has anyone here tried it or have experience with it? Any comments would be appreciated.

Thanks!

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