Anybody going through or that has had Hodgkin's Disease...

9 Posts | Page(s): 1 

Anybody going through or that has had Hodgkin's Disease...

by Icsjoshj on Mon Sep 14, 2009 12:00 AM

Quote | Reply
I am 18 years old and I was just recently diagnosed. What was it like. Any advice? I'm looking for other people who have dealt with or are dealing with the disease so I can establish a support system. I have stage 3 type b. Just finished my second round of chemo. I had night sweats and weight loss. Also had breathing problems and shoulder pain, which was because my tumor was 8-10 inches and was in my chest pushing against my airway and other organs. My idiot doctor thought these symptoms were part of my depression and refused to give me a blood test until I saw a therapist. Well I ended up going to an immediate care for my breathing problems. They have me a chest xray be ause they thought I had asthma, turned out to be a tumor. So he is no longer my doctor. I still have the shoulder pain so they put me on oxycontin 10mg twice a day which I'm about to get increased because it has stopped working as well. So you could say a lot has changed for me in the past month. But I still consider myself pretty lucky and this experience has been positive overall. I feel like it's really helped me grow up.

RE: Anybody going through or that has had Hodgkin's Disease...

by heart413 on Mon Sep 14, 2009 12:00 AM

Quote | Reply
Hi im a 20 year old girl that just recently finished her treatment for hodgkins stage 2a. You may have a different treatment plan than me but maybe this could help you. It wasnt horrible. The worst part was making sure i didnt get sick when my white blood count was low. I was tired, bad body aches, and well that was it. Do expect to gain weight from the steroids but thats ok cause it doesnt make you look sick to others. and if you do lose weight youll have a model figure: ). I hated this section of the whole thing but im gunna bring it up cause it must be addressed. losing ur hair isnt as horrible and scary as you think. its an empowering moment that im must proud of. i shaved it and it wasnt scary. only in ur fear is something scary, when it happens its totally a different story.  I even have a wig that with a hat doesnt look any different from anyone elses hair.It sounds like u already have a positive attitude towards the whole thing and thast what matters at the end of the day. if u tell urself ull be ok well then u will be. I hoped i helped and im not going to say god bless u or ur in my prayers because im positive ull be alright.

RE: Anybody going through or that has had Hodgkin's Disease...

by funnywill on Fri Sep 25, 2009 12:00 AM

Quote | Reply
hi my name is will and im 18 and i have stage 4 hodkins lymphoma. i have a 9cm tumor in my chest and a small one in my back and in my neck. my spleen and liver are swollen so the doctor doesnt think its spread there yet. i just found this out a couple days ago and learned all the specifics today. i dont know the sub type of hodgkins yet ill fond out on monday. i had really terrible shoulder and right side chest pain so i got an xray and then a ct scan and they found the mass in my chest. i have even losing wieght and couldnt figure out why and had night sweats. ive become very irritable as well. i think ill start chemo on tues and now ill have to stop going to college. my parents are really scared but i just now that  ill beat this and be a cancer survivor.good luck to us all.

RE: Anybody going through or that has had Hodgkin's Disease...

by funnywill on Fri Sep 25, 2009 12:00 AM

Quote | Reply
oh and im on percocete and it helps with the pain, but you need to take it very regularly to manage the pain, and eat with it and it makes you itchy its wierd

RE: Anybody going through or that has had Hodgkin's Disease...

by laza1130 on Wed Sep 30, 2009 12:00 AM

Quote | Reply

 

On 9/14/2009 Icsjoshj wrote:

I am 18 years old and I was just recently diagnosed. What was it like. Any advice? I'm looking for other people who have dealt with or are dealing with the disease so I can establish a support system. I have stage 3 type b. Just finished my second round of chemo. I had night sweats and weight loss. Also had breathing problems and shoulder pain, which was because my tumor was 8-10 inches and was in my chest pushing against my airway and other organs. My idiot doctor thought these symptoms were part of my depression and refused to give me a blood test until I saw a therapist. Well I ended up going to an immediate care for my breathing problems. They have me a chest xray be ause they thought I had asthma, turned out to be a tumor. So he is no longer my doctor. I still have the shoulder pain so they put me on oxycontin 10mg twice a day which I'm about to get increased because it has stopped working as well. So you could say a lot has changed for me in the past month. But I still consider myself pretty lucky and this experience has been positive overall. I feel like it's really helped me grow up.

Hi LCS, I was diagnosed with Hodgkins 3A at age 17.  I went through COPP/ABV chemo treatment, 6 cycles.  I participated in a clinical trial and did not end up receiving radiation at the end of the trial.  I am now in remission and have been for the past 11 years.  I saw your post when I was researching secondary effects of chemo since I think I'm experiencing some of those now.  But, anyway, I - like you - had an idiot doctor who did not even order an x-ray until the 5th visit to her office.  I had a large lump on my neck and immediately thought I had cancer and told my doctor that.  My parents and doctor assured me it was a slim possibility.  But, after becoming fatigued everyday afterschool and then getting extreme abdominal pain, another doc decided to do a chest x-ray.  The rest is history. Anyway, in terms of life with cancer, it was pretty much the same as life without cancer except that I always felt nauseated and had no hair.  :)  I kept a pretty positive attitude, which really helped me get through the treatments.  I also went to school almost everyday.  I missed more days towards the end of the treatment and had to be hospitalized once for low blood counts due to the cumulative effect of the treatments.  Overall, I tried to just be "normal".  I didn't want people to pity me.  In retrospect, I guess I was naive to the severity of the situation.  But, ultimately, the worst part was seeing my parents and siblings so upset and worried.  There were certainly good days and bad days.... just take one day at a time. :)  I hope this helps a bit.  You can do it!!  Take care and e-mail me at any time if you'd like.  Lauren

RE: Anybody going through or that has had Hodgkin's Disease...

by positive123 on Wed Dec 09, 2009 11:35 AM

Quote | Reply

Hi I am 40 years old and I too have just finished treatment for HL, I was diagnosed in February this year, like you I had been seeing my GP for about 3 years, the worst symptom I experienced was itching where I literally scratched the skin from my legs and feet until they bled, the night sweats began and then an horrendous cough appeared, I began ABVD treatment which I had 6 cycles of, my tumour has shrunk from 12cms to 4cms of which scar tissue just remains.  I now feel very well and everyone tells me how good I look, of course losing your hair is very traumatising, but, I got on with it and came to the conclusion that if people didn't like me then they had no need to look, of course I got a few stares at first but my twin daughters kept me positive and told me how pretty I was, now my hair is growing back, curly, dark and thick so I suppose chemo has it's bonuses.

 

I now have started on the early menopause so the sweats have begun again, but like you I remained positive throughout and hey you have made me feel even more positive being in remission for the past 11 years, well done you!!!

RE: Anybody going through or that has had Hodgkin's Disease...

by tacoma on Fri Oct 01, 2010 09:35 PM

Quote | Reply

Hello - I also had Hodgkins Disease. Tumour was removed from my lung, my spleen was removed and I had thirty radiation treatments.  This stuff is no fun at all!   But that was 38 years ago !!!  I have to say that reading your post put a big smile on my face - your attitude is amazing when you say that the experience has been 'positive overall' and that it's helped you grow up.  I share the same sentiment with you - every day when I wake up, no matter whether I'm bored or have a bit of a cold, I am absolutely overjoyed just to be alive.  Every single day is a wonder and a gift.  Nobody knows how many "tomorrows" they might have - so you have to just grab onto your life and love it (thats not to say that there won't be ups and downs because of course there will be).  It actually took me a lot of years to grasp onto this concept so when I see your age, I'm amazed that you've reached this point so quickly.  I wish you (and of course everyone else on this site) the absolute best for the future - and keep that attitude no matter what because it will continue to guide you in the right direction as you plan your future.  Good for you!

Karen

RE: Anybody going through or that has had Hodgkin's Disease...

by kroyal on Tue Oct 12, 2010 05:45 AM

Quote | Reply

Hi Will. My name is Kris, and although I have not had cancer, my 21yr old son just completed his chemotherapy on Sept. 27th. He, too, had Hodgkin's lymphoma, and what is called a "mediastinal" mass ( a mass in the center of the chest). He was having weight loss, and a cough that felt like a tickle in his throat, due to the mass pushing on his windpipe. His mass has shrunk from 9cm x 7cm to almost completely nothing, just a small spot of scar tissue. He is just beginning the recovery process. Although he did fairly well with the treatment, he did have an extremely difficult time with nausea. He would typically have chemo every other Monday, and 24 hours later, an injection to boost his white blood cell count to help fight infection. He would usually sleep or just lay around on Tues. and Wed. after chemo, then he felt pretty good. Of course, this is different for everyone, so see how it goes and talk to your college instructors before totally stopping college. You may tolerate it OK. As for your parents fear, and your own, the best thing that I can tell you is to arm yourself with knowledge! Sometimes it is so overwhelming, but keep asking questions until you get an answer you completely understand, and this will help you and your family, both:) I will say that although we were close before all this, my son and I became even closer. And sure it sucks, but there were some pretty funny moments for us, too:) So, good luck, hang in there no matter what, kiss your mom, hug your dad, and you, too, will get through this! Also, ask your doctor for some information on a clinical trial drug called SGN-35 to see if you may be a candidate. It is a new drug, one my son took along with ABVD chemo. I'm sure your doctor can discuss it with you. I hope I haven't rambled too much, and I hope even more this has given you some hope, and maybe a little peace:)

RE: Anybody going through or that has had Hodgkin's Disease...

by kroyal on Tue Oct 12, 2010 05:50 AM

Quote | Reply

 I also meant to tell you to make sure to tell your doctor you are "itchy" after taking percocet. That is usually a mild allergic reaction to that drug. So check in with doc on it! :)

9 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.