The Cancer is Gone...The Effects Live On

[Redlight]

So I have been selected to be part of a study at MD Anderson to study the effects of BEP on my immune system, short and long-term. They are fascinated as before cancer I had not been sick for years. I was hospitalized after both of my first two rounds of BEP and they ended up eliminating my third round as I developed drug toxicity from the Bleo and my pulmonary function dropped significantly. I also still have moderate hearing loss more so in my left ear which seems to be permanent six months out. Kind of funny that I find myself turning my head sometimes to hear people like I am eighty years old or something.

Almost two months post-chemo I began developing neuropathy in my fingertips and soles of my feet, I developed shingles and broke out with acne all over my chest and shins. I have been feeling sick ever since, sore lymph nodes, fatigue, general malaise, and flu like symptoms. For the past three months this has progressed with swelling and stiffness of my fingers and joints all over. I thought it was bone pain at first, but as it hurts to walk with my hips being sore and popping and knees stiff, I know this is more of a soft tissue inflammation. I just went in on Monday to a Rheumatologist who is determined to figure this out. Had a ton of x-rays and more blood than MD Anderson has ever taken in one sitting. He also sent me for a bone scan on Wednesday.

I go back on Monday to get my results, then go to MD Anderson to meet with Internal Medicine. I really hope that they are able to determine the cause of all of this, if it is related to the chemo, why and what can they do about it? Hopefully this will be able to help them determine the best way to handle long-term care for those where their immune system gets battered like mine.

[Aegean]

Red,

I am really sorry to here that the battle rages on, but on a different front. I am happy to see that you are taking the bull by the horns and taking the after effects head on and getting the right folks involved to figure it out.

I can't offer any info as to what is going on with your immune system or bones, but can thank you for agreeing to take part in that stud at MDA. Hopefully something useful will come out of it not just for the future, but for you personally as well.

[TC_Skier]

Cancer is an ongoing battle that we will carry with us the rest of our lives...

I'm sorry to hear about your problems Redlight, I feel as if i can relate as well. Also, im writing this to let young adults know that everything they are feeling, we feel it too. I'm hoping that other people have some of the things that I will describe, let me know if i get whiny.

Age 22, stage 2A in right testicle, 4 rounds EP, 6 months clear

For the past couple weeks I have been in pain constantly. One day it'll be my heart/chest as if i'm having a heart attack. The next day i feel like i can't breathe and have to manually remember to breathe. I also have been feeling some twinges in my back and my arms as well as my incision are in my groin. Recently i have a new obsession where i am lightheaded throughout the day and things seem surreal, almost as if im ready to pass out. I fear i'm about to have a seizure.

Now, these things aren't constant and they are worst after a big night of drinking, so I don't want to give the wrong impression. I was the strongest person before chemo and now i literally feel like crying sometimes throughout the day. I know i have anxiety but its not about anything. Does anyone else feel 'phantom' pain during the day. I pray that my upcoming CT scan will show allclear, i always get anxiety the week leading up to a check up...Anyone else?

Hang in there everybody, we can do this, together

[starjayroman]

Oh yes. Jay has diabetes, neurapathy in both his hands and feet. He is afraid to use a can opener. He walks different, he has degeneration in his SI-joints. He said he now knows how his friend who has MD feels when he walks. He has GERD. For awhile it was as if everytime he went to the doctor they were finding out something else was wrong. He also has memory problems and retrograde ejeculation. And a blood clot but he is doing just fine. Another patient at the Blood and Marrow transplant clinic said that all these are just the price that is paid for going through cancer treatment.

[Redlight]

Yes, all the side effects of things are really nice. It was found out that my Vitamin D level was almost non-existant. Who would have known something so simple as that could cause so much pain that I could barely make it to my desk at work. The unusal thing is that I live near Houston and get an abundant amount of sun. This was also most likely the result of my getting sick all the time, every two weeks it was some new cold. I am taking a massive amount of vitamin D now and feel a little better. ALL of my joints pop and crack and the neuropathy and hearing loss I think have become permanent reminders of cancer. However, I seem to find strength in knowing what we have all been through and what we have overcome.

[Matt H]

Redlight, Im happy you brought this up sad that your going through this but my doctors response to the cold/flu swollen lymphnodes nonstop is a revolving virus.I have never had swollen nodes that hurt like i get now all the time i told the doctor that too i believe they dont agree but I also have the dizzy lightheaded spells on a near daily basisI used too get sick once a year at most in fact it had been over 2 years proir to chemo.The chest pains ive had as well .The back/knee problems had for a while l1-s2 are flat but ive accumulated some upper back issues since chemo and it was before returning to work so i dont know the cause still.I get tired of in my opinion whining to the doctors about it all.The blunt of the pain in fingertips and feet is on my left side as well.In fact im 4 months post chemo and strangely enough i swear my left foot has proceeded to get worse.I assume its stopping from getting any worse now though as ive read up to 6 months post chemo nueropathy continues.

[starjayroman]

Redlight,
We live in Minnesota. The doc said all Minnesotans could use taking Vitamin D. back after Jays 4*BEP, the primary doc put him on Vitamin D because it was so low. He had to take 10000 milgram tablets once a week for a month.