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has anyone who was cured of HL gone on to get bone cancer in later years due to treatments of the HL??

m-star's picture
m-star
Posts: 443
Joined: Apr 2010

t
THE TITLE SAYS IT ALL!
Just wondering if anyone had this?? I had HL 19 yrs ago and had chemo and mantle rads and raed online that im now at an increased risk of developing bone cancer (amongst others) due to the chemo and rads i recieved to cure the HL.
iT REALLY WORRIES ME AS I GET ALOT OF JOINT PAIN AS IT IS. Bur the last 2 weeks the outside of my left knee,kinda to the left of the kneecap but slightly behind it,had been hurting.Its not bad but it feels like it needs to crack but wont.If i press it its tender. I cant feel any lumps but then would i if it were bone cancer???

I do tend to scare myself easily with these things.I have no other symptoms,no weight loss etc.

I have had knee and hip pain for years now but this is not directly in the joint like the other pains.if i twist mt left foot and knee out to the lft i can feel it.

My GP never does anything when i go with this type of thing though.Especially when i say it could be connected to my chemo all those years ago.Its as if he's thinkin.."oh here we go again.."

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

Have you found your way to at ACOR website? It is a wealth of information and a way to connect to survivors just like you and me. Here's the link:http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=LT-SURVIVORS

It has numerous mailing lists that you can join. I've provoded the Long Term Survivor link, but you will find a Hodgkins Lymphoma List too. Once you join the list, you will get an email of anytime someone posts and you may add a post too. You will have access to the archives also. For example, do a search on bone pain or bone cancer here and read what other survivors have to say. There is a wealth of info on this list. The list moderators have access to LT Effect doctors too, if need be. Sometimes it is hard to read of the LT effects survivors had but there is so much info here, you can educate youself. It's a balancing act. If you have all ready joined, sorry, maybe it will help others!

Bone cancer/pain... I have had unexplained pain in many parts of my body that comes and goes. Sometimes I tell my doctor, sometimes not. I guess if it isn't constant, I feel it's not life threatening. I just need to know why it's there and I never get the answers! Right now, I have strange sensations/pain where my breast cancer was and the lymph node removal sight after 2 years. (Had a double mastectomy too). No explanations. I asked my doctor if I should tell him about new symptoms. He said I should, but most times they are bushed off. I need them to be looked at as a 3 time cancer survivor, treated w/radiation and chemo, has a bone piercing pain and needs to know why! Unfortunately, we shouldn't have any additional tests that pose additional radiation exposure to us so every pain can't be fully explored. Also, when tests are ordered, the results aren't always black and white either. So we need doctors that can look at the entire picture of who we are, listen to us and keep a close, guarded eye on us. Do you have a Long Term effect doctor? I just went to one at Memorial Sloan Cancer Center in NYC. Excellent experience.

Sorry, I think my long winded answer strayed off topic!!!

m-star's picture
m-star
Posts: 443
Joined: Apr 2010

we dont have long term effects doctors or clinics here in the UK =(
I didn't even know about ANY long term side effects of the chemo or mantle rad's until about 7 years ago when we we notified about the BC risk! My onc asked me if i knew why i was having my annual check ups and i assumed it was to check if the HL came back.She said no,after this length of time,it was to check for any side effects of my treatments! I'd never been told! In a way,i was better not knowing,as ever since then i have been worried and paranoid! I'm glad i knew of the BC risk though as i could do something about that.But as for the other risks??

I was worried about getting xrays and scans which would expose me to even more radiation.It's a catch 22 situation. The bone pain might well be nothing serious,but to be absolutely sure,it would require a scan.But getting that scan would mean more radiation,which could cause further problems in yrs to come.

I did visit the ACOR site once but couldn't figure out how to join up to get on their mailing list.I will try again and persevere.
Thanks for the info

Kay

miss maggie
Posts: 929
Joined: Mar 2010

Hi Cathy,

I found the website very confusing. I was able to register, but when I clicked Hodgkins Lymphoma List I was unable to do anything. Would appreciate more info.

Thanks

m-star's picture
m-star
Posts: 443
Joined: Apr 2010

i had a similar problem miss Maggie. I could not get any further.

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

I found it difficult to navigate ACOR too!! Try this:

go to this page:
http://www.acor.org/mailing.html?sid=12

choose:
The ACOR mailing lists FAQ

choose:
How do I join a list

follow directions for:
Subscribing With a Web Form

choose the list (I signed up for Hodgkins Lymphoma and Long Term Survivors)
once you pick one, you will see "Subscriber Settings" on the right. Hit this and enter your info.

Hope this helps. I don't know why it has to be so hard, but it sure is worth it when you finish subscribing. Let me know how you 2 make out. We'll keep trying until you're successful!

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