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After Treatment?

alison30
Posts: 1
Joined: Mar 2003

Hello, my name is Alison and I just found out today that my cancer is gone! I am very happy but I was not expecting to still be exhausted since I finished chemo in Nov and radiation in Dec. I have radiation pneumonitis which is a real pain because I am always short of breath and worn out. Now my heart always feels like it is beating to fast or funny. My doctors never told me about all the side effects after your done with treatment. At this point I don't know when I will be able to go back to work! Is anyone going or gone through this? I would appreciate any info greatly. I think my doctor is fed up with and I am scared to go to him with any more complaints. Help!

LilPebbles7
Posts: 10
Joined: Mar 2003

Hi Alison, I have been in remission since 1995 so I know quite a bit of what you're going through. I don't have pneumonitis but I do get shortness of breath and the fast heart beat. I think the scariest thing that you should be worried about is that you can't go to your doctor with anymore complaints. If you really feel this way, maybe you should seek out another doctor. You're going to be tired for quite a while, in fact I don't even know if you'll not be tired. There are things that you could probably do to help with the breathing and such. If you've ever had pulmonary function tests, you could ask that technician or therapist what you can do. If you have any other specific questions let me know!! Good luck!

jeeperskreeper
Posts: 6
Joined: Mar 2003

So the fast heartbeat you guys get; does it just come on by it self or with activity... I had Hodgkins 2a(ABVD, RADIATION) and now am getting a really fast heartbeat when I do simple task periodicaly... IS THIS NORMAL???????????????????????????????????????????

curran
Posts: 1
Joined: Aug 2003

The fast heartbeats I experienced would come when I bent over or with activity. I was treated with medicine for about 4 years until it was uncontrolable and was advised to have surgery to carterize the extra electrical pathway in my heart. That worked for about 3 months until I was snow skiing and started having chest pains. I ended up having triple by-pass and now I am pending a double valve replacement. All due to scar tissue from chemo and radiation. Not to scare anyone I just want to advise that severe heart problems are side effects of chemo and radiation and should not be taken lightly.

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Jonathan7870
Posts: 3
Joined: Mar 2003

Alison,
I finished chemo/stem cell/ radiation therapy back in 1996. I found that there were several side effect that I was unaware of. The good news is that none of them were serious. I can say that now because I have been through them, but at the time I always feared the worst. It took me a full year after all of the treatment to actually feel like I was me again. Hang in there. Sometimes it feels like it is going incredibly slow, but each day, you will get a step closer to feeling like yourself. And remember, always discuss these issues with your doctor. They can provide you with some insight. Good luck and God bless.

mommy1st
Posts: 2
Joined: Mar 2003

Yes, I am going through this. I finished my last radiation the beginning of Dec. I had the Stanford IV (5) chemo and just over 4 weeks of radiation. My area of radiation was from my jawline to my midline (just below my breasts). That is a pretty large area I was told. Anyway, I have a pain too often when I try to take in a deep breath. I have other pains and I also am one of those pesty patience. I even scheduled myself a follow-up visit 2 weeks ago just to go over my aches and pains with both my radiologist and oncologist. I was not even told about this pneumonitis. I don't know exactly what that is. I was just told that my discomfort could be radiation related. It really concerns me. I feel that bad strange things are happening inside of me and I am feeling them. Then I get nervous like what does it mean....ya know? I go for my 1st "remission" follow-up scans in about a week or so. Currently under my arms are achey and this scares me beacuse my underarms have been uninvolved so far. Write me if you would like. Good luck and take care.

BeezyBop
Posts: 3
Joined: Mar 2003

Hello Mommy.....I was diagnosed in 93, but knew something was wrong a year before. I was in stage 2 when treatment startted. I had six months of chemo. Had 37 days of radiation. I was permanently marked under both ear lobes, both underarms, and right between my breasts. ( Little blue dots.) Sometimes people ask what that is, or the scar I have from the port. Had a port put in and then removed 3 yrs later. My hair was growing in till radiation, then it fell out again! and I was very tired..and my skin was burned.And my under arms hurt too .And taking a shower was so draining..but I went to work through it all..am a hairdresser. (don't know now how anyone even sat in my chair !)Had no health insurance, and had to support myself...after last teatment ended up in hospital for a week, but guess I did OK. Your body has been through so much. There can not be bad things left in there. You are going through a kind of junkie withdrall (I call it)Am sure the chemo gets it all. I am 10 yrs free now. Never look back. All the things You are feeling now is normal.It is just that your body needs to re-adjust itself now.I had to hold on to the railing when I went down stairs for geez.......years....but exercising helped. My legs are strong now. I was told it took a good year before all the chemo is out of your body...Things that you feel -just call them episodes....they will come and go. But YOU ARE ALIVE...and I am sure your family is so happy that you are.Just go day by day.....some days will be better, Listen to your body, not your brain...The end is realy the easy part. Good luck to you....

pstanley7
Posts: 1
Joined: Mar 2003

Congratulations Alison -
After going through Chemo, Radiation & a Transplant in 1999, I thought the same as you, "Will I ever go back to work?" In time you will gain your energy, stamina & your life back, It will seem to be a very slow process. It took me a year or more, before I was feeling stronger. From experience, don't hesitate to tell your Dr. about your physical trials. I felt as you feel about my Dr, and I sought another oncologist. As you probably know pneumonitis is inflammation of the lungs. You have persevered through the hardest part, keep your chin up and I will be praying for you. God Bless!!

carpentert's picture
carpentert
Posts: 13
Joined: Apr 2002

I've been in remission for 2 years now... It took me about a year to feel completely back to normal. Listen to your body. Take it easy until then... ABOVE ALL... discuss how you feel with your doctor. He's not as fed up with you as you think! You'll be ready to Rock 'n Roll before you know it!

Tracey

kacaff
Posts: 2
Joined: Apr 2002

Hi Alison
Congratulations on your remission. You must feel an extreme amount of relief to hear that news. I had hodgkins disease 13 years ago when I was 19 years old and have been in remission ever since. They treated it differently back than in that if you only had stage 2A, they only treated it with radiation, no chemotherapy. At the time that sounded good to me but now they use both so they do not do to much damage from using radiation alone. One problem that I did have for a while that went undiagnosed was my thyroid. I was having heart palpatations the same as you (sometimes it beat so fast I thought it would never stop)and also was very short of breath. It turned out that my thyroid had been damaged from the radiation treatments and I needed to be on thyroid medication. I also needed to cut back on my caffeine intake because that seemed to make it much worse.
I hope that helps! Best of Luck to you and your continued health!
Kathleen, Long Island, NY

AlysonA
Posts: 2
Joined: Apr 2003

Hi Alison...from Alyson! I'm 31 and have been in remission from Hodgkins for about...24 years. I was 7 when I had cancer the first time and was treated solely by radiation. There were a few minor side affects but nothing as severe as you are going through. The second time I had cancer, at age 12 (19 years in remission), there were no follow up treatments although it took me months to get back on my feet and feel the same. A blood clot burst behind my kidney and my kidney was subsequently removed. But enough about me.

Just know that you will get stronger and take this time now to fully understand that your body has gone through a most traumatic time. But also rememeber that you deserve the utmost care and if you have any concerns at all, call your doctor. And if you aren't satisfied, find a new one. There are doctors out there with compassion--you just need to find the right one.

I wish you all the best; a speedy recovery and a lifetime of happiness and good health.

-Alyson in Pittsburgh

scheiner
Posts: 2
Joined: Apr 2003

Congratulations, Alison! Although I'm not a survivor, I know how great it is to get the news that you are cancer free. My husband is 1 week away from his 5th anniversary of being cancer-free. He was diagnosed with Hodgkin's in 1997 and finished his chemo and radiation in April 1998. I don't want to scare you, but I want to be honest and say that he has had several side effects from his treatments that he did not expect, several we are still looking for answers to. Never be afraid or hesitant to go back to your doctor to ask questions -- this is your LIFE and is not to be taken lightly. If your doctor isn't giving you the time or attention you deserve, find a new one. Cancer is scary and the fear doesn't go away. Every time my husband gets sick or has a new 'symptom' we are scared that the cancer is back. So, we visit the doctors to make sure all is well. Best of luck to you for a long, cancer-free life.

sue38
Posts: 1
Joined: Apr 2003

Hi alison. My name is Susan. I had Hodgkins stage llB. I just finished chemo in Novermber and radiation in January. I have neen seeing a pulmonologist because I too have shorness of breath and am tired. He did a cat scan and also pulmonary tests which have come back okay. He is going to do a nuclear scan and a pulmonary stress test within the next to weeks. I am going to mention to him what you said you have. I might have what you have. I wish you lots of luck!!!
Congratulations to you!!!!
Sue38

Hi Alison

Beanie
Posts: 4
Joined: Apr 2003

Hi Alison:)I also had chemo and radiation. I was very tired after all the radiation i went through with. I did work though before my second to last chemo treatment. I just took it really slow. And as far as that doctor or yours goes...I would find a new one asap! Doctors like that should not be in the business they are in. I would refer anyone to my doctor..if you are interested..just holla at me:)

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