Helloooooooooooo

Duggie88 said:

Patty

I seem to be more tired but I atribute it to my aging. However, I do exercise, I do sit ups, pull ups, and jog every day. My wife calls me for dinner, I sit up on the sofa, jog to the kitchen, and pull up a chair.

All kidding aside, I hope for the best.

      Jeff

jeff, you are tooooooo funny!

dj

wmc said:

Jeff you need one of these...They work great

I use it daily........

Hi Patty!

Nice to hear from you! Class of 2010. I don't post too much, but am so glad to check in with people.

pattyanny said:

Hi Staceya!

Good to see you also! Yay! 

Jeff you are too funny! Lol!

The bloodwork I had for Sjogrens came back negative.   So back to square one. The doctor did give me a medication, but the first day I took it, I had every side effect listed on the insert! Arghhhh! The prednisone worked like a charm, but you cannot stay on it for any length of time due to kidney failure. I am feeling exhausted, because I am doing volunteer work and am on my feet running around taking care of Seniors. I refuse to give up! I am hoping with the time change on the east coast, and the nice weather ahead, I will begin to feel better. I am starting with Vitamin D, as I am lacking that one, and figure B12 cannot hurt either. <sigh> I laugh at myself - wishing I actually HAD this disease! Praying we all continue to THRIVE not just survive.

Love & Prayers,

Patty

Hi Patty!

I met my new Primary Care physician last week.  After hearing about all of my symptoms, the first word out of his mouth was Sjogrens.  Interesting to hear that your tests were negative.  My doc has ordered a whole suite of blood tests - Rheumatoid factor, ANA AntiNuclear Antibody, CRP CReactive protein and some other expensive stuff. I also have the foot neuropathy going on, and I have no idea if this is new, or if I've had it all along.  I do recall tripping and stumbling a lot right after treatment ended.  Still walking into doors and walls now. Mid-range hearing loss, minor tinnitis, fatigue, hair loss, ... you and I are like twin daughters of different mothers.   I'd love to chat about this.  I will send you a private message with my contact info. I am on the west coast, but I'm sure we can find a reasonable time.

Deb

Hi Patty! This thread got my attention too!!

I am sorry to hear you are so tired. FWIW I could nap 7 days a week on a moments notice, anytime, anyplace. The only reason I don't is because I work a lot and cannot afford to retire. (if retired I just may take a nap every day) This has been a condition with me long before I ever got cancer. Over the years in my previous career I had crew members who could fall sleep on on a moments notice and others who required 30 minutes lying in a bunk before they could sleep.

Anyhow, on another note, I am also of the graduating class of 2010 :-) and happy about it. I will be 5 years out post treatment in May. About a year ago I started having severe pain in my neck and head on the primary side. Major neuropothy. My ear and the side of my head tingling something fierce but mainly pain. I texted my radiation onco and she said get here now. I did and had 2 MRI's to the head & neckand they said I was all good, just a lymphatic infection. She gave me 3 drugs and I ate them all and the pain disappeared. Unfortunatley the side of my head still feels numb and tingles alll the way to the tip of my ear but no pain so I am happy.

So for the last year I just figured calateral damage and lived on since I had no pain. By the way I also have the standard regular side effects, Terrible Tinitus and major hearing loss from chemo. I ended up only getting 2 of the 3 planned cisplatin doses because of my hearing loss. Oh well. As far as the rest, saliva is 100 times better than it was after treatment, not perfect but good enough. Taste fully restored after a couple years. Sensitivity terrible though. Spicy is out of the question, Ketchup is to hot if that gives you an idea. Basically anything with vinegar including 99% of all salad dressings are a no no. It just burns. Hot stuff just not happening and I used to love it;-( Also, I have Raynauds phenomenon and I had it before i got cancer as well. During treatment it was off the hook worse and the first couple years out it really sucked. Now 5 years out it has gotten much better. It is similar to neuropathy. I have it mostly in my hands and a little in my feet.

The moral of the story is you are not alone. I thought I was good to go until a year ago when that crap started. The one thing I cannot explain Is weight loss. 5 years out I am still down about 20-25lbs.  Yes i was a little overweight but not really that much. Started at 200-205 ish and now am 180-175 ish and have always been otherwise pretty healthy. I am not sure sure but I think the thyroid meds make a huge difference. I have more energy now than pre-cancer. I still eat the same. Only thing really different besides hot stuff is i do not really eat much bread or bread products because its just a hassle and less beer. This is why I think the thyroid is huge and most doctors I have learned do not test for it correctly.

Well I hope this helps somehow. I did not mean to dump my story on you but cancer is the disease that just keeps on giving. I have friends who are doing much better and another friend who is doing much worse. I also have faith as that is why I am still here. I have recetly been plauged with a bunch of other crappy side effects but I will save it for later as I am waiting for more tests.

Again i hope this helps.

Take Care

Mark