Hodgkins disease survivor

hodgkoid2003 said:

Late Effect Clinics
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)

missde3 said:

Well - it's good to see this
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!

awgarner said:

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

blessed09 said:

yes I have balance issues
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.

QRX said:

Problems
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!

DennisR said:

Hi Mike,
I had full body
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 said:

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

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?