Helloooooooooooo

debbiejeanne

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

jeff, you are tooooooo funny!

dj

wmc

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 need one of these...They work great

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

staceya

wmc said:

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

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

Hi Patty!
Nice to hear from

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.

Skiffin16

pattyanny said:

Hi Hawk!

Yes Hawk, I got it all going on! LOL! The prednisone was great, and I am sure I gained a few more pounds, as it also increases the appetite. I was grazing every hour! I was just happy to be a part of life again, even for a week! I did take Friday off to lounge around, as the med made me so energetic, I had to tell myself to stop. My atrophied muscles felt the work out. Good to be up and about. Praying the new med is less powerful, but does the trick. Thanks Hawk. Always is my prayers. Sure wish I could get to Florida for some vitamin D and surprise Skiffin. Wouldn't THAT be funny! 

 

Patty

Florida...

pattyanny

staceya said:

Hi Patty!
Nice to hear from

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.

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

Super-b

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

Helllllooooooo

Hi There....new guy here

This thread grabed my attention as I have the neropathy as well and it is driving me creazy....more that the hearing loss and tinitus. Hate having to look at my feet to see where the heck i am going and tired of knoking the photos off the hall way wall evey morning as my feet learn to work again LOL.

So far I have been told that it will get better with time....at least most of the foot drop has gone away and i will be able to change gears on the bike this spring....if I can hold it up.

I have found that a B complex does seem to help with nerve damage somewhat. At least I can tell when i do not take it.

Will be following this with great interest

You rock girl

Bill

pattyanny

Super-b said:

Helllllooooooo

Hi There....new guy here

This thread grabed my attention as I have the neropathy as well and it is driving me creazy....more that the hearing loss and tinitus. Hate having to look at my feet to see where the heck i am going and tired of knoking the photos off the hall way wall evey morning as my feet learn to work again LOL.

So far I have been told that it will get better with time....at least most of the foot drop has gone away and i will be able to change gears on the bike this spring....if I can hold it up.

I have found that a B complex does seem to help with nerve damage somewhat. At least I can tell when i do not take it.

Will be following this with great interest

You rock girl

Bill

Hi Bill

I have the developed the neuropathy in my feet recently, and the doctor prescribed Gabapentin 300 mg. I am taking it once a day, although he prescibed it twice a day. I have not increased the dosage, as it is working (HOORAY!) and the first week it did cause abit of depression. I knew it was the medication, so I plowed through, and feel okay now. It really is such a relief! I will not increase it unless I feel I need to, and my feet start hurting. I am going to add the B-Comp0lex and I know it could not hurt. Yes, hearing loss, and tinnitis can drive me crazy at times! So tired of saying "Excuse me?" I usually can read lips, unless the person has a foreign accent. Lol! I am looking into the Lions Club in my area. I see they help with eye glasses and hearing aids. They are located internationally. I certainly do not have $5000.00 to spend on hearing aids! If I had $5000.00, I would be on a tropical island with tinnitis and deafness - Lol! Praying you continue to heal, and stop knocking the darn pictures off the wall! Thanks Bill!

Blessings, Patty

stayingpositive

Hey Patty! I'm back here

Hey Patty! I'm back here again also, nice to see your name again.

Sounds like some of the stuff I have been going through also.

LOL, I have to nap about mid-day, I injured my back during my physical therapy come back (L4 vertabra compression fracture) and my bone density went to heck because of the white count going down so often during chemo. I have been told I have osteoporosis and i'm only 55! Doc told me I have the bone structure of a 75 year old woman (I guess that is about when women have density problems). I was prescribed alendronate but it was making all my joints hurt too badly, and the one other prescription I rejected because of the side effects listed (can cause cancer or death, why do I want that?). I am on a calcium, vitamin treatment for now until my density increases or stops decreasing. (need fusion surgery)

Following this post because of the same physical attributes a lot of folks are mentioning, did anyone have interferon during thier treatements? for how long? did your white count drop a lot?

My teeth are just now starting to loose thier fillings and because of muscle spasms in my left side of my jaw, I am holding off...ok, i'm a little leary of what might happen because when I yawn my jaw goes haywire, what will happen if i have to hold it open for a long period of time? I am partially numb on the left side of my face so the fillings being gone are not bothering me, but I know I have to have them fixed, and I do have insurance.

Keep us posted on what you are doing and how it is working.....

 

D Lewis

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

Rheumatoid, Sjogrens, autoimmune...

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

petroglyph

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

I am sure you are aware that

I am sure you are aware that neuropathy in the feet happens a lot with diabetes.

My wife has symptoms like yours and we have chased it around the block several times. It looks like maybe we are on to something. The symptoms you have mentioned are common with lyme as you said, diabetes like I said, but is common with a hard to truly diagnose Fibromyalgia.

What my wife has is EBV, or Epstein Barr Virus. Do a search. We all have it, but it flairs up after a stress event, it is an immune disorder and takes a long time to recover from, but is totally curable. Look it up. If it sounds like you, find someone who deals with it. PCP's tend to dismiss it. 

MGC

Tired

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

 

pattyanny

MGC said:

Tired

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

 

Thank you!

Thank you all for your concern & responses. What a great bunch I belong to! I am so tired, and you all gave me a lot to chew on here. I have been volunteering with Seniors, and guess I am overzealous. Worked too many hours in 3 days, and eyes are closing. I seem to have energy as I rum around helping them, but when I get home, I am shot. Please forgive me. I need to print out your responses so I can read them, and give a coherent answer. Thank you, and God bless!

Love & Prayers,

Patty  Zzzzzzzzzzzzzzz