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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?

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!

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

If you are looking for a late effects clinic, there are several accross the US. And they are helpful.
I can understand if you are in pain, frustrated, and leary about treatments, but to be honest, and fair, it is not right to tell people to blankly refuse treatment, of any kind without knowing their situation. I deal with late effects myself for my hodgkin's back in the late 80's, but I know having treatments gave me another 20 years and two beautiful daughters.
Treatments today, whether chemo or radiation, are being improved every day, sometimes making obsolete what was just used 5 years ago. And they do take more care when it comes to side effects, whether short term, or long term.
I know of several late effect clinics accross the US, and if you are interested, please just reply back with just your state. But please, no more unsafe medical advice.

Paul E. (Hodgkoid2003)

QRX
Posts: 3
Joined: Jun 2009

You are absolutely right Hodgkoid. Treatments have changed quite a lot.

One year after my treatment ended, the entire protocol changed. ONE YEAR. They started using a better diagnostic technique and far less radiation, to more localized areas. One thing that frustrates me beyond end is that I saw this coming. I read the literature, told my doctors about it, and was told to forget it, they won't deviate from the then-current protocol. I now have to pay the price for their inflexible ignorance.

Just to be clear, I am not giving any medical advice, just advising people to look into alternatives to medical treatment. It's important to look around and see what else is out there.

Sure, please tell me anything you know about late effects clinics. I am currently in Colorado.

Thanks!

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

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)

missde3
Posts: 7
Joined: Jul 2009

I was Dx w Hodgkins in 1988 at the age of 28. Opted for radiation and refused the chemo because i had 3 little kids and felt I could always go to it if the rad didn't work. I was just Dx with breast cancer in April. Could not get a lumpectomy w/rad due to previous rad. Only option was mastectomy. I opted for bi-lateral since the docs are convinced it was caused by the HD rad and if it appeared in the other breast, the only option would be a mastectomy. I also have neck and back problems. Thyroid, esophagus, stomach, skin and heart issues. I developed fibromyalgia the year after the Hodgkins. I am thinking about looking up the 'late effects' doc now. I didn't even know there was such a doctor. My son, 6 years after me was Dx with Hodgkins, too at the age of 18. He had chemo only. We're both in extended remission. I'm reeling from the breast cancer Dx. I'm only 49 and to have two different types of cancer in one lifetime is two too many. Especially when the cure for one is the cause for the other...All you females out there - if you were under 30 when you had radiation for the Hodgkins, insist on an MRI for your breasts! The mammo didn't show it...

molly12
Posts: 5
Joined: Aug 2009

HI
I am from the UK. In 2003 there was a dept health recall exercise for anyone treated with mantle radiotherapy before they were 35 years. This was for the breast cancer risk. I was missed out. I developed breast cancer in 2004 and had a mastectomy. The tumour was where it was described in the dept health report. I asked for bi lateral mastectomy but told by the surgeon the risk was not bi lateral so he only removed one breast.I discovered after this that the risk is bi lateral and decided recently to have another preventive mastecomy. The week before this I was told I had precancerous cells in that breast. We do not have clinics here for the long term effects. I have read of the other risks but have to tell my Doctors. Nobody has ever warned me or informed me of the research findings, this includes my oncologist.What are late effects clinics and is the info on the damage caused by the mantle radiotherapy more available where you all live.

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

Molly,

There are two websites, actually 3, where you can find help with late effects, and clinics. The first is www.acor.org, look for the mailing lists for LT Survivors (like us). You subscribe, and one of the first emails you will get will tell you about Childrens Oncology Group, and also, Cancer Survivor Guidelines. I forget which one has it (though I want to list Childrens Oncology Group), but they actually list where they are (and there aren't many.

The key for you, being across the Pond, if unable to come to the US, you can at least get the information to share with your primary care doctor, who should undoubtedly be your biggest ally.

Let me know if you don't have success to any of these sites.

Paul E. (Hodgkoid2003)

awgarner
Posts: 1
Joined: Sep 2009

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.

Pat1968
Posts: 1
Joined: Sep 2009

Hi I am a 26 year survivor of 2B Non Hodgkin's & Received 6 monthes of MOPP & 6 weeks of Mantle radiation 5 days a week. I was over radiated and got radiation anuminitis they burnt 3/4's of one lung & 1/4 of the other lung. I Have Cronic Lung Disease & In 2003 I blew up to 188 pounds and Lucky for Me My PCP Who has been my doc since i was 19 noticed that my Thyroid was inlarged he tested my t3's & t4's and the tests came back FINE! He then decided to have me get an ultrasound on my Thyroid and from there a Biopsy witch came back as Thyroid cancer. I had my Thyroid removed that year and I have been on Synthroid ever since My weight dropped to 120 and I Don't Feel like the same Person I was before they removed my thyroid. I cant stop taking the Synthroid cause Your thyroid Controls Almost every Thing in your body in some way or another and the syntrhoid is to keep every thing thinking you still have your thyroid so Ive been told! So I can't help ya there But I suggest you have them Check Your Thyroid Or Get another Doctor!! As for the Lungs I have My own Breathing treatment machine ( A Nebulizer ) and do treatments ( Albuterol )as needed I also have an inhailer ( ProAir HFA )witch i keep with me at all times IT Does HELP! Ask Your Docter to get you a Nebulizer for Home and Talk to him about an inhailer! Hope this helps!!! Best Of Luck Pat

mbundgus
Posts: 14
Joined: Nov 2006

Yes after 13 years Post Hodgkins Lymphoma (chemo and radiation) I had to have my Thyroid and para thyroid radically removed... (look at my neck in my current picture ) I'm 50 years old. I had it removed in 1976 -- Had a Spinal Cord Minigioma removed with a triple laminectomy in 1996, and Breast Cancer 2000. all are a result of Radiation treatment to cure me of Hodgkins Lymphoma. I am yet Healthier though than most.

mbundgus
Posts: 14
Joined: Nov 2006

Throw a Spinal Cord Miningioma into it ! Results of the effort to Cure Hodgkin's Lymphoma I had neck and full mantle radiation. Mine was done in 1963 and I've been told by professionals it was much cruder in those days... so my stats might not apply. I am just now noticing difficulty swallowing.. pain in the neck, and shoulders but hey its been 45 years, and I have a seperated clavicle, and half my neck is gone. Muscle and all. I blame it on not working out like I use to, but it probably was all the surgery and radiation.

cher26bear's picture
cher26bear
Posts: 9
Joined: Nov 2009

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

ERIC 60
Posts: 4
Joined: Nov 2009

27 years ago I had HD and receive Rad for 6 weeks, chest, neck. My spleen was removed also.
I wish I was told of late term effects. I have had them all. Cancer of the skin, throat, lung issues. Final 6 years ago my doctor said I was cured and did not need any more CT's.
My skin started to itch about 4 years ago and I was told it was nerves.
2 weeks ago I pushed to have another CT and they found a couple of masses.
Turns out it is a rare form of HD NLPHL. Turns out I might have been able to catch this years ago if I had not though I was cured, and had looked for late term effects.

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molly12
Posts: 5
Joined: Aug 2009

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

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molly12
Posts: 5
Joined: Aug 2009

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
Posts: 3
Joined: Apr 2010

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

molly12
Posts: 5
Joined: Aug 2009

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

cher26bear's picture
cher26bear
Posts: 9
Joined: Nov 2009

d

Ginger Snap's picture
Ginger Snap
Posts: 3
Joined: Sep 2010

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

inky hands
Posts: 3
Joined: Jan 2014

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

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

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2042
Joined: May 2012

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

cher26bear's picture
cher26bear
Posts: 9
Joined: Nov 2009

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!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2042
Joined: May 2012

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

max

molly12
Posts: 5
Joined: Aug 2009

To Paul

Thanks for the info I will look at this info. Its good to know that their are others that understand. Its a pity we can't go back in time and know about the effects and maybe we could have made different choices. I recently read that the long term effects of mantle radiotherapy were known as far back as 1970, certainly no one discussed it with me. Do you know if anyone has ever looked at compensation ?

missde3
Posts: 7
Joined: Jul 2009

Well - it's good to see this sight. Hodgkins, age 28. Stage IIIa. My son was diagnosed 6 years later - Stage IIb. I had rads. He had chemo. I have had so many odd things go wrong with me. My thyroid died within 3 months of rads. My neck muscles are always so sore and hard. (I probably droop, too) I have Fibromyalgia and Chronic Fatigue Syndrome. I have esophagus and stomach problems. I have heart irregularities. I have hearing loss and tinnitus. I have skin problems. I have developed breast cancer. I never feel right. I keep going to all these different doctors but no one seems to put it all together. I just had a bilateral mastectomy due to the high risk of breast cancer in the other breast. There's a gland swollen on my thyroid. We all have to be so diligent with making sure we really watch what's going on with our bodies. The anesthesiologists are afraid of surgery on me because of the atrophied throat muscles. There's a lot of stuff that we don't even know about but we all have to hang in there!

RichardW1
Posts: 2
Joined: Sep 2009

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....

tmynes
Posts: 3
Joined: Apr 2010

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

Toni

tmynes
Posts: 3
Joined: Apr 2010

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

Toni

bbbdirector
Posts: 2
Joined: Dec 2009

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

mtiberio
Posts: 3
Joined: Apr 2010

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

mbundgus
Posts: 14
Joined: Nov 2006

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.

Anonymous user (not verified)

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DennisR
Posts: 148
Joined: Sep 2009

Hi Mike,
I had full body radiation in February.
I lost 80% of my hearing but, don't really know that it was the radiation that caused it, I suppose it could have.
Whatever, I now have hearing aids and have never heard this well before in my entire life. Small price to pay if it was caused by the radiation, but I suspect it was the Artillery from the service that was the culprit, perhaps aggravated by the rads.
DennisR

cher26bear's picture
cher26bear
Posts: 9
Joined: Nov 2009

a

QRX
Posts: 3
Joined: Jun 2009

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

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

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
Posts: 3
Joined: Mar 2011

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
Posts: 1
Joined: Nov 2011

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
Posts: 2
Joined: Nov 2011

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's picture
cathyp
Posts: 365
Joined: Dec 2009

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

Baltogrrl
Posts: 1
Joined: Oct 2014

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.

mozza127
Posts: 7
Joined: Mar 2015

hi,my names ian iam a 47 was18 when first treated hodgkins lymphoma neck and chest had big dose of chemo and radium, ,,now having bad side effects ,,infections,bad chest ,tummy pain and back pain ,lots of mucus to and feeling under weather,how are you after treatment thanks ian

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