please help

Ulla

dear sue

i felt the same as u said when i was on taxotere ..even nose bleeding ...feeling hot all the time ...legs so weak to carry me ..feet nubed and tingling and all my body was reacting so strange...

but just look at me now,,,i did t honey as u will tooo..i am sure ....it just need time ..i even still feel like having some SE of the steroids and chemo..plz hang on honey..praying for u to feel etter

Ulla

oh dear annie ..i sent my post be4 i saw urs..

wat a woman u r!!!!all these languages that u can speak ,,it must be amazing,,,

love u sister..

dear sweet sue,,

trust me honey it is not a good idea to stop ur chemo,,,all the dose is calculated very presizly to each one of us according to the diagnosis detailes ,,age,,weight...and ur body built,,,so it was the treatment that is made for u ,,it is not the same for everyone,,it is ment to be so individual honey,,so plz dont think to cut it be4 it ends,,,

i have the heart burn also due to the taxotere and when i told the onky about it she gave me those ..meprazol pills which really helped me to get rid of this feeling ..but i never sufferred of it again since i finished the rx,,

dearv sweety ,,can u keep drinking icy drinks for ur mouth sores..sometimes it really helps,,,

have u tried to grat ice chipps (or just sucking ice cubes if u cant grat )during the chemo session??it is helpfull too ,,it dont let so much of chemo inside the mouth cappilliaries ..so u feel less SE in ur mouth next time...dear honey sue...plz remember that u r not fighting the cancer now,,u beat it allready..u r just eleminating any possibility of it coming bak after u kicked its nasty a$$ already...it is u who have the upper hand on it,,,u r killing its lil chance to rare its ugly face on ur life again,,so u r sure that u dont want to cut ur treatments now,,,

plz baby ,,,hang on we r all with u,,,

love u all

AnnNYC

Hi Sue,

I wish you could call SOMEBODY about mouth ulcers.  Can't the helpline possibly refer you to the oncologist?   I don't know if this article could be of any help to you -- maybe just showing it to onc or other chemo provider could remind them that this is a serious problem that some doctors are really trying to fix.

[Hope this link works for you]

http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD000978/frame.html

Also, somewhere in that article it said that some people found honey helpful.  I'm grasping at straws here -- but I had been thinking honey, just because a lot of new studies are showing that it's good for soothing/healing a lot of things.

geebung

Dear sweet sisters,

Sue, Lisa, AE & UB, Mia and all of you who are going through these extremely painful and hard times - I am thinking of you and praying that you will have the strength to get through. 

I have an acute flare up of LE the last few days and can't write much. It is nothing compared to what you are all going through.

Much love to you all,

Jane. oxoxx 

livesstrong

Sue - hope you are a little better today.  I would stay away from chocolate, its not good when you have mouth sores.

bbl,

AE

livesstrong

Sue -

Chemotherapy can cause sores in the mouth and in the throat. These sores can easily become infected from bacteria and viruses present in the mouth. The drugs can also make mouth tissues dry or irritated and cause them to bleed.

• Medications: If you have mouth sores, ask you doctor for a medication to apply directly on the sores; don't use over-the-counter applications unless you check first with your doctor. Use lip balm if your lips are dry. And if you are experiencing excessive mouth dryness, ask your doctor about using artificial saliva products.
  
  
  
  
• Lifestyle:
  1. .
  2. Remember that good oral hygiene and dental care are important.
  3. Use a soft toothbrush that won't hurt your gums and make them bleed.
  4. Avoid all mouthwashes that contain alcohol; these can really burn your mouth.
  5. If your mouth is tender, eat foods that are cold or at room temperature, because hot or warm foods can irritate.
  6. Drink plenty of liquids.
  7. If your mouth is really sore, eat softer foods; stay away from anything irritating or acidic that could hurt your gums and lead to mouth sores.

my3girls

Sue, Sorry you are still in so much discomfort.  I remember how I felt like I was burning from the inside out. I would wake up at night, my feet felt like they were on fire and itchy!! It looks like our dear AE gave you some good info. regarding the sores in your mouth.  I know I avoided anything acidic or spicy...usually only ate cold foods and drinks. Ulla..how do you like your new laptop?  Is the new kitty still a joy? Jane, I am sorry that your LE has flared up!  I am soooo worried about getting it!  I feel some extra heaviness and pain at times since my surgery.  I can't wait to feel normal again!  I hope you get it under control soon and feel some comfort. I went to the onc. today.  She was going to give me an IV of saline...because she felt that my dizziness and symptoms were due to being dehydrated.  When I saw that I would be sitting in the infusion area...I told her I couldn't do it.  I can't mentally go there..so I promised I would come home and drink water and gaterade to get myself hydrated again.  All my blood work came back fine. I go for a bone scan on Friday. Well...I spent so much time there, that I need to get a few things done here, before Olivia comes home from school.  She is excited with some good news.  I just got a call from her agent, and she has an audition for a local Mcdonald's commercial tomorrow.  Say a prayer and keep your fingers crossed that she gets chosen for the job!! It's a hard business...so many people audition.  But...you never know!! That would be great..and good money for her to save for college! I am sorry to report that I got a phone call early this morning from my dear friend Kim.  Her mother passed away peacefully this morning around 7:00am.  Thanks to all of you for praying for Kim and her family.  We all really appreciate it.  She is in a better place right now...and she went out in glory...all of her 5 children and some grandchildren surrounding her. Much love to all my sisters here.  I truly love you all!! AE...how is our UB doing today?  I think of you everyday and am praying for both of you! xoxo Lisa

my3girls

Sorry...Jane..forgot to ask you...how was your gettaway?? Did you catch any cool breezes? Karen, hope you are feeling better with each day. Mel...soon I will get to reading the Nordies book. It's been hard to concentrate with the dizziness..so I haven't been reading.  I will pass it on to you when I am finished. Promise!

Shirlann

Hi honey, its Shirl.  I worry about stopping the chemo.  Think carefully, the reason is that you want to KNOW you have done EVERYTHING that you can possibly do to keep this from ever coming back.  They are throwing everything they can at you because you are young and (were) healthy.  (You will be again).

I still think you are having residuals from the shingles.  That is a long time thing.  Not a few days, but weeks.  Is there some way you can go on public assistance, just to finish?  I know you would hate that, but for heaven's sake, don't put your job ahead of your life.  Think very carefully, you are really quite close to the end.  February is almost gone.  March, April, May, then you can count the days.  Think of how far you have come.

AND throw a royal fit, see if they are doing all they can for you to stop these awful side effects.  I am a little puzzled you are having such a rotten time, and they don't seem to be able to help you.  Just seems not quite right.

Anyway, sweetie, keep on keeping on, one day at a time.

I have made a New Orleans doll of Tom, and I am sticking pins in him.  This is supposed to work.  Some kind of Cajun witchcraft, we'll see, let me know if his nose falls off.

I love you, dear, so much, I am so, so sorry this has been so rotten.

Hugs, and kisses, Shirlann 

lvtwoqlt

Just dropped in a moment to try and catch up from the weekend (2 1/2 pages).

Sue, I'm sticking my quilting needles and pins in the tom doll also (and in a place where it would really hurt!). Let me know if it helps.

I agree with Shirlann - sometimes it helps to pitch a fit about the se's that you are experiencing. I thought that they did all they could to reduce the se's of the treatment. Sorry you are having so much trouble.

Sheila

sueps

Hello Special Sisters xxx

Well I hope you are all having a good day xxx

Thankyou for all your advice I truly do appreciate you all xxx

It is 8 30 pm here in the UK ... and I am feeling extreme pain still ...d/h is at work tonight so I will go an have a bath and try and get some mental strength from somewhere...my head is destroyed with frustration xxx

 So here is where I am up to....I have been waiting for a lessening of the s/e .... which is not happening.... if anything it is worse as all the tiredness sets in ..the pain is excrutiating.. My mouth is sore .... the mouthwash doesn't seem to be doing much...everything I eat I feel my tongue will bleed.I have started to have heavy nosebleeds and I am feeling like my body is being cut up.... so .... there is no relief yet. Now I could phone the helpline...but they would send me to the out of hours docs which is a 20 min drive.... too tired...I already knocked my car up on the way home from work tonight. So here is what I will do... I will see if the s/e get any better tomorrow...and try and hold on til Thursday....or Weds...when I will go to see my own gp and see if I can get anything...  As for the next treatment...OH MY GOD.... I scream inside at the thought....I am no wuss to pain or anything ...but this is beyond what my head can get through...I know you all understand ... so next treatment I am going to go haywire and tell them ... this has been absolutely the week from hell ... I am concerned about the bleeding  etc....

So what else to add to this.... one of my colleagues at work was off sick from work on Saturday.... her aunty died. Well it turns out her aunty was 39 and got dx with b/c 2 years ago... had surgery chemo rads ...only for it to come back....WHAT A THING TO PASS MY EARS RIGHT AT THIS BAD TIME I AM HAVING.  I drove home tonight looking into the hills...in quietness and asked who was taking the p*ss  bootface ...it was like a dagger at dawn feeling...and the clouds were grey and my mood was like ughhhh well.. very in the desolate mountain feeling...

I am sorry I am so ill xxx

sueps

AND WHAT A RAY OF SUNSHINE MY POSTS ARE LOL

SORRY SISTERS ...LOL..... YOU KNOW I AM ME UNDERNEATH ..LOL

I AM LAUGHING TO MYSELF ...LOL

GOD I LOVE YOU ALL !!!  XXX

BUT I TRULY PROMISE THAT I AM SUFFERING BAD

sueps

...and I text Tom last night to tell him I was rough and might not be in...he said rest up drink water and you will be fine .... well what does he know ... stick the pins in girls ..xxx 

hahahahah...Sheila ...quilting needles !!!! LOL

lvtwoqlt

Glad I could make you laugh Sue, trust me those needles are sharp! (you should see my finger tips on my left hand, not through the skin but pricked to no end). I wear a thimble on my right hand but my left hand in underneath to turn the needle back up to the top and the thimble on the left does not give me the close feel that I like to make small stitches.

Sheila

geebung

I love the needle in the doll thing! Especially after hearing about Tom's latest extremely insensitive and infuriating comment "just rest up, drink plenty of water and you will be fine..." I want to strangle that man!

Love and hugs to you Sue - you are so much in my thoughts. I think you need to have a huge tantrum in front of your medical people so that they will do a lot more to help you. Surely you shouldn't be suffering to this degree. 

Love to all.

Jane 

mommy_mia

Hi Sue,

My mouth sores eased up in between treatments.  But I had 3 weeks (I think you go every 2 weeks, right?). 

And I used this prescription mouth wash that the onky gave me that tasted nasty but seemed to keep things somewhat under control.  It was just called "Magic Mouthwash" and was by prescription.  I will try to find out what's in it and send you the details.

Mia

sueps

Mia thanks so much ..I will look forward to hearing about mouthwash.

What treatment did you do...are you still on it...I am sure you are ..if I remember xxx  I go one week one week and then it works out almost 3 weeks before one week one week again. So I have 3 sets of these 2 week treatments left then rads xxx Did you bleed at all..from your nose..or anywhere xxx

Thx Mia xxx

Jane .... thankyou for baring with me!! I guess I am coming across as a whingebag!! I do hope your L/E is clearing up..and that you are gettings some relief ....I love you xxx

Shirlann

Little, honey, whatever you have to do, I know you will do what you can.  But I think some help.  Either that or its just too much to work. 

You ARE NOT a whinebag.  For goodness sake, raising the boys alone, working many hours, running a house ALONE.  And now this?  You are an Amazon woman, and we all know this.  I would have NEVER been able to do what you have done, you are brave, strong and fearless.

No matter what, you know all of us will always be with you in spirit and love you completely.

I will go now and stick and extra pin in Tom's doll.  It will fit quite nicely with the knitting needles!  Rat, what a typical man.

Love, hugs and kisses.  Shirlann

honeygirl

Mr. Tom ,

livesstrong

Sue - this is for Tom -

 Notice were the pin is..............

livesstrong

Take that, you horrible man you!!!

honeygirl

Hey , thanks to all who have pm'ed me your birth-dates. For anyone who wants to , but hasn't yet , please pm me. I will compile a list and post for us all.

Lisa , good luck to Olivia! I would love to see her on tv for McDonalds! Keep us posted. Hey , why are you having a bone scan? I know how you feel about the infusion room. I go to the onky Thurs. and when I am in the waiting area , I can see into the room and my stomach gets queasie! Don't want to go back there again! Lisa , take you're time reading the book. No rush. Hope your dizziness is better. Surgery does take a lot out of you. You'll feel better , it just takes time.

sueps

...I have just woke up ...it is gone midnight again so I am going to bed....I hate the time going so quickly.

AE ..... LOLOL  .... that doll is  amazing! Stuff them pins in lolololol....thankyou so much for this....it has given me strength...YOU ARE MY ROCK xxx  give ub a hug xxx I love you xxx

Mel....your pictures always amaze me and really make our pages special when you sprinkle them ....I will pm you my bdate now ...thankyou Mel .... thankyou for coming into my life and doing all that you do xxxx

I  think I can see EC  a little better again ..... lets hope I have an easier time soon xxx

Shirlann (mum)  I promise to sort the chemo oncs docs s/e out ...I cannot do this without sorting something xxx

Much Love xxxx

livesstrong

Sue - I will keep "pinning" Tom as often as I can. 

Now get some sleep.................

xoxoxoxoxoxoxo

Ae 

livesstrong

Sue - just keep on going.............

sueps

AE ........ finding you was a miracle....I am off to bed .....I miss you so much .....please know that I think of you loads xxx

yes PIN !! PIN !!  ..lol ...STUFF THEM IN AND POKE THEM UP EVERYWHERE !!!!

Cya tomorrow girls xxx Sweet Dreams xxx

livesstrong

Love you too young lady..............sweet dreams.

Wren

Sue, I'm hoping you get some help soon with your sore mouth. I hope your doctors can give you something that will soothe it.

I'm visualizing those pins going in to Tom too, LOL... He needs a swift kick in the butt!

portiasproudmom

OMG!!!!  I am dying, here!!  Those voodoo dolls are GREAT!!!! 
Take that, Tom!  You nasty, nasty man!!! 

Take care, Sue.  I hope those ugly mouth sores clear up.  I was so fortunate never to get them. 

Love and hugs to all,

Karen

portiasproudmom

Here you go, Tom!  Gee, wonder why you hurt so badly today?  Take an aspirin and drink lots of water.  See you at work tomorrow!!