long-term effects of radiation

yesyes2

cathyp said:

Orthopaedic Surgeons
Hi Maggie,
I sent you a private message in response to reading another post from you re your hip before I read this post. I work for Ortho's and my mother was a hip replacement patient. My mom had her surgery in November. I had Thanksgiving at my house but she made most of the side dishes and she went on to host Christmas Eve. In the spring she was polka dancing and that summer climbed waterfalls! The key was she had a fellowship trained hip surgeon, did her physical therapy before and after surgery. It paid off because the pain medication was stopped days after her surgery. Her quality of life sky rocketed! Her only regret is that she wished she did it sooner.
Good Luck Maggie!

Double Hip
Hi Maggie,

I had double hip replacement surgery in 2006, 1 year before my lymphoma diagnosis. Prior to the operation I could not get my legs appart more aboout 1 ft. I was in constant pain and on pretty heavy pain meds. Now remember that I had both hips done at the same time. I was off pain meds in less that 24 hrs. after surgery. Within 2 weeks I was walking a mile a day and in less that a month I was off any type of walking aid. In fact I carried my crutches on a mile walk. Before the operation I could not walk 5 feet with out help. The worse thing was prior to the operation I had to be off all my arthritis meds for 2 weeks. The pain at that point was pretty intense at all times.

My right hip is perfect. I do have problems with my left hip which started about 3 months after surgery. Really pisses me off. And I did lots and lots of research on doctors all over California to find the very best. So you never know. And remember I was really in a bad way by the time I did the surgery. And I am not sorry I had my hips done.

Cathy is so right. You need to chose your surgeon carefully. It's best if hip and/or knee replacement is all the doctor does. In my opinion you don't want a general otho doctor.

Good luck to you. I have never met anyone who was sorry they had their hip replaced.

Blessings,
Leslie

anliperez915

miss maggie said:

You are so welcome
Dear Cathy,

I appreciate so much you reminding me "there has been so much life along the way"

I have to admit I am feeling a bit down this morning. Since having my bmb in Oct 2009,
my hip is getting worse and worse. Right now I am depending on pain medication. I realize
I can no longer put surgery off. I was going to wait until after the holidays. Not sure now.

Is there anyone on this site that had hip surgery? I would appreciate it so much hearing about your experience. It's ok to tell me the good and bad. I think I am a big girl now??

All the very best to you also. Hugs and love Maggie

Hi Miss Maggie
Hi Miss Maggie,
I'm really sorry to hear about all the pain you're going through! I wish you all the luck into finding the best Dr for your hip surgery. Please take care of yourself and I'm sending you a HUGE HUG.

Sincerely,
Liz

allmost60

anliperez915 said:

Hi Miss Maggie
Hi Miss Maggie,
I'm really sorry to hear about all the pain you're going through! I wish you all the luck into finding the best Dr for your hip surgery. Please take care of yourself and I'm sending you a HUGE HUG.

Sincerely,
Liz

Me too Maggie...
Hi Maggie,
BIG hugs from me too! You let us know how things go and I will keep you in my daily prayers. My Aunt had both of her hips replaced at age 84 while battling her breast cancer. She did great after her two surgeries and gets around just fine. Her cancer is back, but we will beat it back again, just like the other 3 times it came back She will be 87 in Dec and she's one tough lady. Hope you find the perfect doctor...let us know. Love you...Sue
(FNHL-2-3a-6/10)

miss maggie

yesyes2 said:

Double Hip
Hi Maggie,

I had double hip replacement surgery in 2006, 1 year before my lymphoma diagnosis. Prior to the operation I could not get my legs appart more aboout 1 ft. I was in constant pain and on pretty heavy pain meds. Now remember that I had both hips done at the same time. I was off pain meds in less that 24 hrs. after surgery. Within 2 weeks I was walking a mile a day and in less that a month I was off any type of walking aid. In fact I carried my crutches on a mile walk. Before the operation I could not walk 5 feet with out help. The worse thing was prior to the operation I had to be off all my arthritis meds for 2 weeks. The pain at that point was pretty intense at all times.

My right hip is perfect. I do have problems with my left hip which started about 3 months after surgery. Really pisses me off. And I did lots and lots of research on doctors all over California to find the very best. So you never know. And remember I was really in a bad way by the time I did the surgery. And I am not sorry I had my hips done.

Cathy is so right. You need to chose your surgeon carefully. It's best if hip and/or knee replacement is all the doctor does. In my opinion you don't want a general otho doctor.

Good luck to you. I have never met anyone who was sorry they had their hip replaced.

Blessings,
Leslie

Thank you Leslie and Cathy
I am so encouraged reading both of your posts. Cathy, I forgot to mention your mom in my private message to you. It is amazing to read your mom is 77, had hip surgery in November, and helped with Thanksgiving.

Leslie, how encouraging to read your path to a new life free of pain and medication. I understand so well not being able to walk far. When in a store, I am always looking for boxes high enough to sit on.

I thought I had all the information I needed as far as choosing a doctor. Along came Cathy,
with additional homework for me to do.

Thanks to you both, I am no longer afraid. Love you both Stay well and happy. Maggie

miss maggie

allmost60 said:

Me too Maggie...
Hi Maggie,
BIG hugs from me too! You let us know how things go and I will keep you in my daily prayers. My Aunt had both of her hips replaced at age 84 while battling her breast cancer. She did great after her two surgeries and gets around just fine. Her cancer is back, but we will beat it back again, just like the other 3 times it came back She will be 87 in Dec and she's one tough lady. Hope you find the perfect doctor...let us know. Love you...Sue
(FNHL-2-3a-6/10)

Liz and Sue
Dear Sue and Liz,

Thank you for your thoughts and encouragement.

I just want you and all to know. In the future if my NHL never came back and was in total remission forever, I would still come back to this site. I feel I have gained so many friends that I now consider family. I love all of you and pray for all.

Love Maggie

cathyp

miss maggie said:

Thank you Leslie and Cathy
I am so encouraged reading both of your posts. Cathy, I forgot to mention your mom in my private message to you. It is amazing to read your mom is 77, had hip surgery in November, and helped with Thanksgiving.

Leslie, how encouraging to read your path to a new life free of pain and medication. I understand so well not being able to walk far. When in a store, I am always looking for boxes high enough to sit on.

I thought I had all the information I needed as far as choosing a doctor. Along came Cathy,
with additional homework for me to do.

Thanks to you both, I am no longer afraid. Love you both Stay well and happy. Maggie

You are welcome Maggie.
You are welcome Maggie. Hopefully you'll find the perfect fellowship trained hip/knee replacement surgeon. Are you on Facebook? If so, you'll probably get tons of recommendations from friends who had someone close to them go through surgery, if you ask. Keep us updated!
Cathy

miss maggie

cathyp said:

You are welcome Maggie.
You are welcome Maggie. Hopefully you'll find the perfect fellowship trained hip/knee replacement surgeon. Are you on Facebook? If so, you'll probably get tons of recommendations from friends who had someone close to them go through surgery, if you ask. Keep us updated!
Cathy

Me Too
I am sorry, I am not on Facebook. As you can see, I have so much time today to write and answer some of the posts. I have to admit it is so nice.

Anyway, I wrote in a prior post, my orthopedic doctor is fellowship trained. He is older, maybe 64, is that old for surgery? I want Dr. David Hirsh. LOL

I have checked some of my resources. Best orthopedic surgeons in New York, Manhattan and the Bronx. These doctors are suppose to be the best of the best. Fellowship trained is hard to find. I will probably have to go into Manhattan. Dr. Neil Cobelli works with Dr. Hirsh, but I don't believe he is fellowship trained. I have plenty of time for research.
I can't thank you enough for your support.

Hugs from Maggie

sarahsmurray

blueroses said:

heart problems as late effects
I had nhl and had an autologus bone marrow transplant 18 years ago and have atrial fibrulation and now a pacemaker from the drug adriamycin. Doctors confirm that, not sure if other drugs during chemo would damage. I had total body radiation as well and suffer from early arthritis and cataracts from it for sure.

update on your heart problems

How are you doing these days?  My husband had bone marrow transplant after two rounds of chemo and radiation (4000 rads to the chest) 25 years ago.  He is just now being diagnosed with afib.   He's taking all kinds of meds and echocardiogram showed some valve disease and low ejection fraction.   Do you have any suggestions of doctors or anything.   thank you.   hope you are feeling well.

 

 

sarah

sarahsmurray

Pandemonium Parrot said:

Long Term / Heart
I was diagnosed in 1976 with Hodgkins. 14 weeks, or 70 radiation treatments later I had a spleen go missing along with about 40 strapping pounds off a 20 year old. Not to mention the delight of radiation sickness.

Fast forward to 2010 and the long term effects of all the radiation has necissitated a, or two heart valve replacements. I'm currently scheduled for a bone marrow biopsy for anemia, which other procedures have failed to identify the cause for the low blood count. Have they broiled my bones, as well as baked my heart ?

As far as treatments or ramifications, I'm not in the know any longer. I'm curious however to speak with others who have experienced symptoms of long term effects of mantel radiation. Rarely do you hear anymore about such large doses of radiation being administered.

I've only yesterday 12/12/10 joined the CSN community so my page or profile are a bit sparse. Certainly I'd appreciate chatting with anyone with simular stories.

how are you since valve replacement?

how are you doing?   my husband is just now getting problems with his heart.  he had a lot of chemo, adriamiacin, 4000 rads of radiation tot he mantle, eventually a bone marrow transplant all 25 years ago.....was doing great until he started having shortness of breath....has afib.....echocardiogram showed valve disease but cardiologist did not mention it.....he's supposed to get a cardioversion in a few weeks......where did you get valve replacement?  do you have suggestions for doctors to see?

sherry84

sarahsmurray said:

how are you since valve replacement?

how are you doing?   my husband is just now getting problems with his heart.  he had a lot of chemo, adriamiacin, 4000 rads of radiation tot he mantle, eventually a bone marrow transplant all 25 years ago.....was doing great until he started having shortness of breath....has afib.....echocardiogram showed valve disease but cardiologist did not mention it.....he's supposed to get a cardioversion in a few weeks......where did you get valve replacement?  do you have suggestions for doctors to see?

Hi Sarahsmurray

I am a 29th year survivor of Hodgkin's Lymphoma who has had numerous amounts of late side effects from treatment through the years. I received mantle radiation along with chemo. I did not receive adriamicin as I see many others have here but was put on a different regiment that was most likely dropped long ago. Thiotepa,Bleomycin and Velban. In 2000 I was diagnosed with blockages to my heart. I started with an angioplasty and cardiac rehab. I was also on high doses of beta blockers and isosorbide since heart rate was high. By 2003, even with all that was being done, I needed to have a quad bypass and an aortic valve. Radiation is like wildfire and what I ultimately needed was serious intervention. My valve was a level 2 out of 4 stage but as the surgeon explained, (he had much experience operating on many former hodgkin's patients) I would most likely need one in less then 5 years. I chose to have the valve replaced the same time as the bypass and with a mechanical valve. The younger you are, the faster a natural valve will wear out. I figured I was looking at at least 3 more surgeries in my lifetime. As the Dr explained it, my valve was in a grey area at that time and it was a matter of personal choice. What is worse, more reoperations with the risk level going up each time or lifetime anticoagulants. I am in the NY area and had my heart surgery at NY Hospital.

I would ask the cardiologist to give you specific details of the echo report and a copy for your records. There are many issues that can develop with the valves (leaky, etc) and because of the radiation and the fact that he is starting to have shortness of breath, he should be followed closely. There is a site called ValveReplacement.org that is for people with valve and other heart issues that you might want to check out. They offer a wealth of knowledge with this and there are even quite a few on the forum who are Hodgkin's survivors.  Hope this has helped. Good luck with the cardioversion. Wishing you both all the best.

Sherry

kimsha

cathyp said:

Max,
Ha Ha...the guys at
Max,
Ha Ha...the guys at work used to call me Cat!
Anyway, here I am almost 23 years out. I have had 3 bouts with cancer with 2 being HL. The other was breast cancer in 2007, a direct result of the rads I had for the HL.
Take Care!
Cathy

Long term effects HD

I wanted to ask you how you found your late term effects doctors?  I was treated at Stanford University in late 70's and recently treated there for breast cancer.  I had most of my throid removed in 1996 and recently nodules have grown larger again and have all the signs of turning malignant, waiting for results of biopsy tomorrow. I have a lot of other health issues and would like to be under the care of a long term effects doctor so I can better monitor my health.  Any info you can give me would be very appreciated.  Thank you and I hope you are doing very well. 

cathyp

kimsha said:

Long term effects HD

I wanted to ask you how you found your late term effects doctors?  I was treated at Stanford University in late 70's and recently treated there for breast cancer.  I had most of my throid removed in 1996 and recently nodules have grown larger again and have all the signs of turning malignant, waiting for results of biopsy tomorrow. I have a lot of other health issues and would like to be under the care of a long term effects doctor so I can better monitor my health.  Any info you can give me would be very appreciated.  Thank you and I hope you are doing very well. 

Dear Kimsha,
I found my LT

Dear Kimsha,

I found my LT Effects Specialist through a post on this website!  Here is a link that you can search by state and a Survivorshipe guideline:

http://www.survivorshipguidelines.org/

http://www.ped-onc.org/treatment/surclinics.html

I'm sorry to hear you are having symptoms.  Good Luck with your biopsy.  I am awaiting an abdominal ultrasound this Friday.  I am having pain among other symptoms.  Of course I am worried because in the past testing revealed a protrusion on my pancreas.  It's always something.  That's why its helpful to have a specialist so versed in after effects to manage our care.

Please update us on your results if you can.

Cathy

KarlawithaK

late effects of mantle radiation - really late!

I am so happy to read posts from several Hodgkin's survivors treated in the '70s. All that radiation and still here!

I was treated at Strong Memorial Hospital in 1977 with mega doses of radiation, so that brings me to 36 years out of therapy. 

Any effects I have experienced are only in the last year or so. My current issue is heart related. Doc says I will need mechanical heart valves. I also had breast cancer last year. I had the tumor and all breast tissue removed and replaced with life like silicone. The surgeons did a good job and I do not anticipate any more trouble in that area. 

I would like to know: 1. Is there a data base out there anywhere of people who were treated in the 70s? and 2. Has anybody been treated with hyperbaric oxygen treatment?

Karla

 

April F

36walter said:

I have a whole in the sac that holds the heart and I understand that yes, the radiation causes this type of damage. I also have a heart murmur that they are not sure whether radiation caused it. The thing is, I have had a lot of the 'long term' side effects since remission in 1978, but I pause and think, okay, so if I didn't have the treatment would I even be alive? I think no.. so I try to bear with the side effects and enjoy my 'borrowed time'.
RE: Long term side effects, I go to Dana Farber in Boston for follow up appts. and they are great resources of info. Does the place where you were treated have a survivor's clinic? Personally, I find so much comfort in knowing that all my symptoms are real and legitimate and that usually outweighs the severity of them. (thyroid, premature menopause, the heart thing) etc.
Hope this helps and I don't sound preachy!
:-)

Long term effects

I am 30 1/2 years post stage 3 NHL, I was 17 years old and it was 1982. I want through an experimental protocol that was brutal. I am so thankful everyday that I'm alive and have 4 children. I have pulmonary fibrosis and have heart valve disease. One day I will need heart valve replacement. I have become symptomatic with shortness of breath and I'm waiting for my next echo in June. Now I am having neuropathy and pain in my feet with chronic headaches. All my medical problems have all been related to my treatment. I realize I would not be here without my treatment but lately it's been hard to deal with. If my heart issues are not bad enough now having pain walking is wearing me down. I had 15 different chemos and chest radiation. This  is my first post and it's nice to find a site where others understand.

Victoria.e.moore

cathyp said:

Dear Kimsha,
I found my LT

Dear Kimsha,

I found my LT Effects Specialist through a post on this website!  Here is a link that you can search by state and a Survivorshipe guideline:

http://www.survivorshipguidelines.org/

http://www.ped-onc.org/treatment/surclinics.html

I'm sorry to hear you are having symptoms.  Good Luck with your biopsy.  I am awaiting an abdominal ultrasound this Friday.  I am having pain among other symptoms.  Of course I am worried because in the past testing revealed a protrusion on my pancreas.  It's always something.  That's why its helpful to have a specialist so versed in after effects to manage our care.

Please update us on your results if you can.

Cathy

Hi Cathyp, I just wanted to

Hi Cathyp, I just wanted to say thank you for your post!!  I emailed my local LTFu Clinic and made an appointment.  I am a survivor of 21 years, dx at age 16, in remission at 18,  and no doctor at any point has ever, EVER told me anything about a follow up clinic.  I was "cut loose" from oncology about 11 years ago, and they just told me to have annual visits with a primary care of my choice, and of course I spent more time educating the doctor than she did me, which I have discovered to be the norm.  Thank you again for sharing the link.  I have since, shared it on facebook, hoping to give someone else some light at the end of a very long tunnel.

slessurb

long term effects

new user.

 

Hodgkin's disease,  treated 1981, age 19

52 years old today.  overweight.

radiation only, chest and belly.  splenectomy.  all done at MGH

long-term effects i've experienced:

- heart: aortal stenosis, going to need valve replacement soon.  high blood pressure.  some arterial calcification/hardening.

- thyroid nodules (large), taking synthroid.. they say not cancerous yet

- neck and shoulder area bones under developed

- schwanoma (2013), large nerve sheathe tumor removed from back.spinal chord....in radiated zone

- renal carninoma (2009) not sure if radiation related, partial nephrectomy

- perpetual high WBC, no explanation

concerned about things accelerating and/or getting worse.  I fear a secondary cancer, heart/stroke surprise.

am being watched by excellent doctors who say they understand the long-term effects....but a little worried that they are still being reactive rather than pro-active.

anybody have the unexplained WBC?  other questions/comments?  

tutterbrown

OMG i was starting to think i

OMG i was starting to think i was along out here.  i've been researching for years.  it's been awhile but i wanted to say i appreciate your comments.  very useful.  i was diagnosed with Hodgkins in 1985 at 14years old. [girl]  i received 2 sets of radiation treatments and had my spleen removed.  25 years later i had thyroid cancer - removed.  30 years i got breast cancer - removed.  just last year i had Uterus cancer but i don't think it was related.  i've always wondered what that s*** was doing to my heart.  i did have Pneumonia [7 days in hospital] twice in the last 8 years.  WHAT'S NEXT????  again i appreciate your comments and will use them.

RachelF

long term effects HL / 1988

tutterbrown your post brought a much needed smile to my face. here's my quick story to share with everyone:

me: 50 yo female. Excellent overall health; very active, petite, athletic build. Single. Never had kids.

1988 diagnosis. Stage 2. Asymptomatic

Surgery 1: remove tumor from neck for diagnosis

Surgery 2: Splenectomy, laperotomy

Lots of Radiation!  to neck/mantle; then below mantle to groin.

Synthroid: started 1 year after treatment

Cardiologist: about 7 years ago. Clean bill of health!

Mammograms: all a-ok.

I had a final, very thorough appointment with my radiation oncologist after my last CT. He let me know all potential secondary cancers for which I am at risk. That info is shared with my primary care doctor. She developed a comprehensive lists of various tests or screenings that I should have to help detect cancer (mammos, cardiologist, upper endoscopy, colon cancern screening). That's the best approach. Have a plan with your PCP and see the right specialists.

QUESTION: does anyone have GERD, Acid-reflux issues? Mine just started. Help! Is this damage to the LES (lower esophageal sphincter) muscle from radiation?