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Life after Hodgkins

laurelee
Posts: 1
Joined: Jun 2001

Hi all, I am happy to have found this website. I had hodgkins disease in 1985 and went thru mantle radiation for three months and had my spleen removed. My hodgkins started in the lymph nodes in my neck. I havent had a reoccurance since. alot of scares but they have all turned up negative.
I am to feeling the after affects of radiation. I guess you have to be grateful that the radiation worked and we are still alive. I suffer from hypo thyroidism and also
rapid heart beat since the treatment, along with a valve that is leaking and feeling tired all the time.does anyone else have the exhaustion after just doing some little thing. I have a hard time to motivate myself to do anything anymore and this has since come after all these years. I am happy to have found this board because I didnt realize that others suffered from the same things that I am. I just thought the other problems were poor health on my end and never associated them with the radiation. . I had my tubes tied because they told me I would die if I were to have children again so I was grateful that I had the daughter I had. I see now with todays technology you are still able to have children. that is great. Does anyone seem to have a battle with weight gain since all of this treatment? I can diet and diet and nothing seems to move. just get larger and my energy level gets lower. I would be glad to talk to anyone that is going thru this or has just begun fighting this disease. just email me. thanks. I will look forward to everyones reply.

andy_pagin
Posts: 2
Joined: Jul 2001

I am a member of the Long term survivors discussion group, a group started specifically for us HD survivors. There are over 200 members, some with over 30 years survival behind them. You name it, someone will have experienced it and be willing to advise. Its a great group.
Take a look at:
http://listserv.acor.org/archives/lt-survivors.html

The List is owned by Linda Zame who can be contacted at: Zame@earthlink.net

vickid
Posts: 2
Joined: Nov 2000

Hello! I was diagnosed in 1989 with HD and also had mantle radiation after six months of chemo. I also have hypo thyroidism and chronic fatigue. And like you am thankful to be alive. I also have the rapid heart beat. I am curious how you found your leaky valve. I just found out that I have a heart murmur. I have heard more and more recently about patients who have had mantle radiation developing heart problems and I'm curious if valve problems run in your family or if it is a suspected side effect of your radiation treatment.

I was able to have children after my radiation, which was very lucky for me because I was only 18 at the time of my diagnosis. I have had trouble with weight gain and loss, but I think it has a whole lot to do with the thyroid. I try to exercise, but I know how hard it is when you feel so fatigued. It would be great if you could find a walking partner. I don't have one now, but I did, and we really encouraged each other a lot. I find a women's multivitamin with iron helps with the fatigue too. GNC has a good one. (clear it with your doctor first!) Keep your chin up! Your a survivor! Look forward to hearing from you!

sandraperez
Posts: 1
Joined: Apr 2001

Hi: This is my first time on this type of discussion but like you I'm very glad we have all this resources. I'm just finish with my chemo and radiation and I have not had the last scans run yet to know if I'm on remission. But let me tell you that you''re not alone with all those symptoms. I have troubles to have a good night sleeping and as a consquence I'm always tired. Like you, it does not matter if I workout or watch my diet it looks like I gain weight on daily basis. Probably in two week I will have my port removed but as soon as you read my reply you will contact me again, I'm always alone at home and I love to make new friends, specially someone that will share the same feelings that I have after the fight with this disease. Bye

janbobby's picture
janbobby
Posts: 3
Joined: Oct 2001

i am still tired 24/7 it has been 2 yrs

writersblock
Posts: 3
Joined: May 2003

@laurelee

Hello! After going through six months of ABVD chemotherapy and twenty radiation treatments, I found myself faced with many of the symptoms that you described in your post. I'd found this to be quite depressing, since I had been in excellent physical shape prior to being diagnosed, and felt as if I was but a sad shadow of my former self during treatment. I remained committed to working out whenever I could during treatment (although DEFINATELY not with the intensity level I'd grown accustomed to!), but found myself having to drastically modify my approach to training even after treatment concluded. Even today -- eight months after my last radiation treatment -- my routine consists of no more than two workouts a week, lasting no more than a half an hour per session. I'm making constant progress, however, due in part to the fact that I'm not raising the stress level on my body faster than it can accept it. My energy levels have also improved. Discussing the subject with my family doctor, my doctor strongly advises cancer survivors to stay as active as they can, and starting a moderate workout regimine is perhaps the best way to achieve this. That considered, you may want to have a physical and your doctor's okay -- many physicians can even recommend personal trainers and excersise routines that have activities you enjoy in them (sky's the limit, really!).

I would also seek the advice of a Thyroid specialist. You've noted that you suffer from Hypothyroidism (me, too: radiation's tough on that little gland!), and indeed that makes weight loss a tough prospect. However, a thyroid specialist can normally correct the T3 levels in the blood and make it easier for you. Second opinions are always an option if you're not completely confident with who is providing the treatment.

As far as the rapid heartbeat, you may find that your tolerance for caffine is touchier than it once was. At least, such was the case for me! Examine your diet for things like coffee, tea, chocolate, and sodas (both diet and regular). If you're noticing a lot of those items are a part of your daily eats, try cutting back a bit and see if you get some good results from it. Also watch out for "diet pills," which frequently use caffine in the ingredients. Trust me: I was once the type of guy who could drink a pot of coffee and go straight to bed! Then I went through treatment, and emerged with heart palpitations. DOH! Cutting back on Caffine and focusing on my workouts has virtually eliminated this problem, as well as putting me back in control of my bodyweight and self-image.

It's not my intention to play doctor, so please discuss these concerns with your physicians. Office visits are sometimes costy, but worth every dime if you walk out of that office with something you can truly use. These people are the most wonderful thing on Earth -- I truly cannot lay too much appreciation for their contributions. Good luck to you!

becca12056
Posts: 10
Joined: May 2003

Lauralee...It sounds like I wrote that message! I had HD 27 years ago and had radiation...no chemo. I have felt tired for years. Have the rapid heart beat...take medicine for that. Also am undergoing test now for thyroid disfunction. Have a node that they are aspirating Tuesday. Have you ever had any thyroid nodes? How did they turn out?

Cranbrook
Posts: 2
Joined: Jun 2004

Wow sounds like me.Ihad mantle radiation in 88 for hodgkins i also take thyroid medication now i am tired all the time

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