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13 Years After Chemo/Radaiation

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Subject: 13 Years After Chemo/radaiation
Date: 10/05/2006
I was diagnosed with Hodgkins when I was 21years old (now 35). I cant remember what stage I was. I think 1B, I know he said I probably only had it for about 6months to one year. I seem to have left that part of my life behind me and lived as though it never happend. A side from taking herbs and vitamins for the last few years I havent even went in for a check up in the last 8 years. What kind of long term effects can I expect? I have had lots of trouble with my reproductive system,acne,fatigue,teeth,yeast and catching every virus that the daycare kids bring in and now have trouble with my bladder and kidny. I am intrested in hearing what others have seen happen to them after treatment.
Thanks!
Chris
Subject: Almost 15 Years...
Date: 11/15/2006
Hi Chris! You sound like me! I was diagnosed with stage IIB at the age of 21 and have been in remission almost 15 years. I haven't been for an oncology checkup for 7 years and have been pretty much trying to forget and just live. I started having children and got caught up in life. Recently I went to my primary care physician for a respiratory infection and we found a few lumps that need to be looked at. I've had one cat scan that was inconclusive on the lumps in question but they also found a cyst on my kidney, 2 gallstones and what they think is a fibroid on my uterus. This is why I have stayed away so long. It seems the older I get the more scary things they find, I worry until the exams rule everything out and then try to go back to forgetting again. I go for an ultrasound tomorrow for the uterus thing and Monday I have a consultation back where I was treated for the Hodgkins to look at the other lumps. Yesterday I spent the day looking through online medical jounals to find out what life is like this far into remission trying to see if I had fooled myself into thinking I was all done. After scaring myself silly I decided to find a messageboard today to talk to people who know what its like and speak a language I can understand so here I am. The first post I read was yours. So in answer to your question so far all I can say is that aside from a few lumps that pop up and so far have turned out to be nothing things have gone fairly smoothly. I don't have time to be sick anymore now that I have 4 beautiful girls and other than the occasional respiratory infection and a few enlarged lymph nodes that after being removed were nothing to worry about I've been in good health. I'm hoping that things stay that way. I'll know more next week. I'm happy to have met you and I hope others chime in to let us know how they are doing.

McG
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Subject: Almost 15 Years
Date: 11/17/2006
Hi Tracey Thanks for the reply. After looking into it I found out that I was a 11b also. I hope all turns out well at your check ups and I know how you feel. Sounds like you have done very well sence your treatments having four beautiful children and all. I had my two before I was diagnosed. I agree with you on how scary things get the older you get. I am afraid of getting breast cancer now due to the radiation I received along with the chemo. I guess you cant live your life being scared, but it is always in the back of my mind.Let me know how things turn out next week.
Happy to have meet you!
Chris
Subject: i Just Want to Know.....
Date: 11/18/2006
I am 19 and found out that I had Hodgkins disease right after my birthday. I am all done with the treatments. All I had to do was radiation because I had caught it so early. One thing that i was wondering is, did you have any complications with your doctors when you found out that you were pregnant? My immune system is really bad. I catch everything that goes around and I can't stop coughing because my throat is so dry from the radiation and because I get sick with something different every week. I just came to reality after my treatments that I had cancer and I started to cry a lot. I think that it is silly and I don't know why I am doing it. It had only taken 3 months after I found out to get rid of it. Really all I need is someone to talk to about what I went through and the possibilities of what may come down the road.
Subject: RE: i Just Want to Know.....
Date: 01/30/2007

Hi Chris & Lulu--

Everything seems to be going well.  Yesterday I received a 6 page letter from my oncologist explaining what they found (actually didn't find) at my visit and all of the things I need to watch out for in the future.  I've elected to return there for follow up even though its a good drive away as I feel more secure there.  I've also elected to become a guinea pig in 3 different research studies because as they put it "not much is known about the lasting effects of the radiation."  I figure it means better care for me and if it helps them understand what could go on for everyone in our position that's even better.  My first study is on breast cancer--I have the same fears that you do Chris.  They'll be doing both a mammogram and an MRI.  They're trying to tell which test is more accurate for early diagnosis.  With any luck I won't be much help because they won't have anything to diagnose right?  But if they do they'll have two shots a year to find it early.  The next study will be a cardiac study to see how my heart is holding up and then the last one is a lung cancer study.  I had to laugh when they said that my overall emotional health was good and they were happy to hear my journey thus far had been positive but I may benefit from talking to a therapist or social worker there if I have anything I feel I need to talk through--I was tempted to call the number they supplied and tell them to stop sending me reports and research study invitations and I'd feel a whole lot better.  But I've gotten too old I guess to ignore my past anymore and I would rather have them catch anything that should crop up early than wait until its too late.  I just feel like a car that has over 100,000 miles on it and all the parts start going at once.  Gotta keep the engine running....

Lulu I read your post and knew exactly how you feel right now.  I'm sorry its taken me so long to respond I'm just getting back online now.  I remember being where you are now and it's not silly--it's perfectly normal.  The period that you are in now was the worst period for me.  It was fairly easy to be sick.  You do what you need to do to get yourself better and then once you get there you want everything to go back to where it was before you got sick.  You're a different person now and and it's so hard to figure out how to be normal again.  But you will create a new normal.  I did some pretty destructive things trying to be "Normal" again--I went back to smoking and going out to clubs and doing anything I could to experience life.  I figured my chances of having a family and normal life were gone anyway why not do what I wanted.  And being the 4th child out of 5 in a dysfunctional family I had spent most of my young life taking care of myself.  When I got sick I suddenly had people around me all the time and it was a jolt to not feel the daily support yet to need to be back by myself again.  But in a little bit of time you will reestablish the balance inyour life.  The fears, though always in the back of your mind, at least won't be nagging at you.  It's okay to grieve your old life.  But embrace the new chance.  I've learned so much from all of this and I can't say it's the worst thing that's ever happened to me.  I am me because of it.  And I'm a better me than I would have been before.  If you've just finished treatments you need to give your body time to heal--not just from the Hodgkins but from the treatments, the stress, the fatigue...it took me about a year before I could say I felt good on a regular basis.  As your body feels better your emotions should go back to "normal."  If they don't you need to talk to your doctor.  Even though it feels like it sometimes you are no more alone now than you were when you were undergoing treatment.  They're just a phone call away and if you need help re-adjusting don't be embarassed to ask for it.  After what you've been through--you're more than entitled.

Being pregnant the first time was nerve wracking but went very smoothly.  The doctors get a little antsy when they hear you're missing a spleen and have had radiation but I wasn't restricted from anything until the last month.  I was 5 years into remission when we started trying to get pregnant.  It took us a long time to conceive--about 13 months of trying diligently although it was a fun 13 months!  The best advice I got was to start taking the prenatal vitamins early while you're trying to get pregnant .  I worried a lot about the amount of stress carrying a baby would put on my body but it made me diligent about how much weight I put on and what I ate.  I walked daily during the nice weather and worked up until my 8th month.  I did become pre-eclamptic but I had a normal vaginal delivery just one week early.  When we were ready for our second it only took about 5 months to conceive her.  Other than a few kidney stones in my 4th month that pregnancy went well too.  Drink more water than you think is humanly possible.  My third pregnancy was an oopsy.  My second daughter had a rough start with a lot of digestive issues and we had decided two was more than we had ever hoped for anyway and we better not press our luck anymore.  When she was 14 months old we found out we were pregnant again.  I was on the pill at the time but had been taking antibiotics for a respiratory infection so we were also using another method of birth control and we were so exhausted from the first two kids and work and the holidays that I can tell you the exact date of conception because it was the only time we had had sex in two months.   I had mixed emotions and didn't know if could handle it.  A month later I started to spot and we thought I was losing the baby and it opened my eyes up to the miracle I could be losing.  We went for an ultrasound and low and behold I was not losing the baby--I was having twins.  At that point it just became funny and I was so relieved that everything was put into a new perspective.  So if you're worried about infertility there is hope and miracles do happen.  I have 4 beautiful miracles as proof.  I carried the twins until the 8th month and they were born 4 weeks early, no c-section--perfect in every way.

It was nice to meet you both and I'm here if you need to chat--you just might have to holler loud as sometimes I don't get much time online.  I'll check back again soon and I hope everything goes smoothly for both of you.

Subject: RE: i Just Want to Know.....
Date: 01/30/2007

 

On 11/18/2006 Lulu050887 wrote:

I am 19 and found out that I had Hodgkins disease right after my birthday. I am all done with the treatments. All I had to do was radiation because I had caught it so early. One thing that i was wondering is, did you have any complications with your doctors when you found out that you were pregnant? My immune system is really bad. I catch everything that goes around and I can't stop coughing because my throat is so dry from the radiation and because I get sick with something different every week. I just came to reality after my treatments that I had cancer and I started to cry a lot. I think that it is silly and I don't know why I am doing it. It had only taken 3 months after I found out to get rid of it. Really all I need is someone to talk to about what I went through and the possibilities of what may come down the road.

I’m a 10 year 1 month away from being an 11 year survivor of Hodgkin’s. As far as your fertility question I too was told that I might not be able to conceive and to my surprise on the first try got pregnant with twin boys. I hope this brings you a little confidence. I have not had any relapses (Thank God) since my treatment. My pregnancy was healthy and everything went well. If you have any more questions feel free to write.


 

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