The Chemosabe March Cruise

Cynthia: I never knew you could get thrush on the boobs! Got through the nursing years safely, I guess. And don't apologize for having a "little" problem. That lick-the-tires taste in my mouth caused me more aggravation than the tachycardias have, even though the latter are more serious.

On the glutamine, I take 15 grams (3 heaping teaspoonsful -- each one equals 5 grams) twice a day. Lisa takes the same total amount, but does it 3 times a day at 10 grams each time.

Lisa: You poor baby!!! What a horrible time! I wonder why they had to keep you awake for the procedure. I don't blame you for insisting on going home after that.

So you're taking the same amount of glutamine, just on different schedule. I don't know if it's working or just coincidence, but the neuropathy I had on my left hand before starting Taxol seems to be improving. I have more normal feeling in my thumb and first two fingers. Of course, all the skin is peeling off.

3boys: That's wonderful about the tumor shrinking -- how great to have proof that this horrible stuff is working. Too bad about the delay, but how nice to get some more recovery time, too.

PW: It's so tempting to overdo during those little windows when we feel good, isn't it? It's going to feel like such a novelty to have several days in a row feeling good.

Dawn: You know you should be telling the doc everything, right? You never know when 3 little things add up to one bigger something. If you're having chest pains, you really need to tell them.

MissS: I'd be interested to hear how it goes with the fluoride. My dentist gave me some, but I had such problems with my mouth from the start that I was afraid to use it. Now I'm afraid my teeth are going to rot in my head.

The exercise is a real problem, isn't it? Like you, every time I try to re-start my exercise program, something happens. I'm motivated, too, because exercise helps boost the immune system, which we need right now. I wonder if lying on your back on the couch and doing arm and knee flexes counts?

Glad your son finally made it home safely. DS2 comes home this Friday, and I'm hoping my appearance isn't too much of a shock.

whitecotton: Hope you're starting to feel better.

Updated Bar Reservations May 8 - 11

Tuesday: BetteE (#9)
Wednesday: 3boys4me (#9)
Thursday:
Friday: Onlygirl

Playwriter - sorry to hear about the hot flashes. I've heard they can be miserable. You might try keeping a spray bottle of cold water and a fan next to your bed for when you're having one. Then, you'll need a nice warm blanket for when it passes. I'm so not looking forward to those. I
think I've had my last period, at least during chemo so I'm wondering how soon they'll start.

The glutamine is also supposed to help heal the GI tract, so I figure it can't hurt.

3boys4me - how wonderful to know that your tumor is shrinking. I hope your feet feel better soon.

MissS - sorry to hear about your low counts. I've been fortunate that my red count has been good ever since the 2 procrit shots I was given. I've also been taking iron because I read that the shots work better if it has iron to use. It's so frustrating that there doesn't seem to be anything we can do to on our own to boost our white counts.

Chuckling about your dentist wanting to know what meds you take. Most of us could open a small pharmacy by now.


Max - I hear ya on the teeth concerns. One of my biggest fears is that chemo is going to cause me to lose teeth. I actually feel them move just a tiny bit sometimes and my gums are sore. I also have the heavy duty fluoride toothpaste and ACT mouthwash my dentist recommended. I use them sometimes, but mostly stick to the Biotene. I hope we both come out this without any real problems with out teeth.

Well, my onc says it's not thrush. Hmmmmm. It did look much better today than it did last night and no more sore throat. So, I'm relieved but I would like to know what it was. This is the second tx with the white tongue showing up afterwards. I did take 6 probiotic capsules last night but I wouldn't think they would help that fast. Although, they did give me an incredible amount of gas, so I've been tooting like crazy today. LOL

Thanks to the neupogen, my heart is racing today, so I just took a benedryl to see if it makes a difference. I'm also taking darvocet for the bone/muscle pain because the ibuprofin wasn't cutting it.

Warm wishes to everyone,

Cynthia

Cynthia...Your white tongue could be a yeast infection. That's what the Onc told me and my tongue is white. He gave me this yucky stuff to swish and swallow that makes me want to puke when I do but it's getting better. Hugs to ya..rosebud

Thanks so much to all of you for your support wrt my tonsil ordeal. Thanks to modern antibiotics (Cipro) I can once again swallow without wincing and crying out loud. My diet in the interim has been less than ideal - mashed potatoes, pasta with cheese, cottage cheese and cantaloupe, etc. Tonight I had crustless shrimp quiche that my dear BIL made for me when they were here.
3boys4me - good luck with your treatment tomorrow. Hope the week off helped you heal up some from the hand/foot syndrome. What a relief that your tumor is SHRINKING!!! Look forward to meeting you on Saturday! (note: we have a small group of ladies from bc.org who gather once a month here in San Diego and it has been such a blessing for me)
playwriter - to me, you describe a gen-u-ine hot flash! I had my last period just about 10 days before chemo started, but my cycle had become lighter and longer in between for about a year, so I know I was perimenopausal. While I loved the new schedule, I didn't like the night sweats - I started wearing a cotton t-shirt to bed so that I could do a quick change into a dry one. That has become a rare occurence now, so hope your body adjusts rapidly, too.
rosebud - I agree that having my fellow cruisers has made this journey so much more bearable. How is your tongue doing now?
maxgirl - wow - good to hear your neuropathy is responding already! WTG! I'm having major exercise challenges, too. I used to be so active - training 4x/week and now I am a slug.
Nancy thank you for keeping up with our bar reservations for us! Hope you have a fun visit with your son - have to make the most of our 'good' week, don't we?
Dawn - sorry to hear you continue to have GI problems. Have you tried probiotics? The chemo drugs all mess with our normal intestinal flora and the lining epithelium of the whole GI tract, from mouth to ahem, anus. I get my probiotics from a morning glass of kefir, but you can also get them in pill form.
MissS - hope you are continuing to enjoy your son's visit. Do try the regular glutamine supplement. It is supposedly very helpful with the neuropathy, GI tract, and the hand/foot problems - it's easy to take. I got mine on ebay for about half what I have seen in stores and the shipping was quick from this vendor
http://search.ebay.com/_W0QQfgtpZ1QQfrppZ50QQsassZhtxvitamins
Cynthia - yes, mine is 5gr./tsp. too. I mix it into a beverage 3x/day. Glad to hear your probiotics got your thrush under control fast - it definitely sounded like yeast to me, only thing different was you didn't have mouth pain. Lucky for you!
Patti I'm so glad you checked in with us - I was missing you! Hope you get relief soon from the headache and nausea. Mine all seem to get less bothersome about Day#9 or 10 - hope this is true for you, too, fellow TAC sister.
Angel - Sticking around home is much easier these days, isn't it? I get out into my garden daily but my car doesn't leave the garage but a couple of times a week. We have to look at it as self-healing, right?!? Have a great time with your daughter - what a nice, long visit you will have!

I have now composed this message twice (it got eaten the first time) so I am going to stop here and try to post it.
Hugs all around,
Lisa

Well, it sounds as if we are all in the same boat - literally - as far as the SE’s are concerned. Those of us who thought we were not prone to seasickness have discovered that is not the case, and those who already knew they were are sailing along. I’m glad we all have couches in our cabins to lie down on, because I know mine is getting a lot of use lately!
I do not have the energy to do shout out’s to individuals, but please know that you are all in my thoughts and prayers. As I read each of your postings I respond in my own head - hope that is enough for now. You all provide me with so much hope and encouragement, and each time I read about someone experiencing the same thing I am I know we will all make it through this OK. Although I do have to send my sympathy to Lisa on the tonsils and the procedure to drain them.....reminds me of the toenail ripping I recently endured, which is healing nicely right now. What ARE hey thinking, perfroming these procedures on us with no anesthetic?
Update on the Pink Out Tonite event last Friday night. It was wonderful! 275+ women Thursday night and 400+ women Friday night, all dressed in pink in some form. We were each giving a pink watch upon arrival, then entered the Rice’s home where there were pink flowers everywhere. Drinks offered were pink champagne, wine, cosmos, beer, pink lemonade and soda. I had 2 cosmos over the course of the night and felt better than I had in 3 days! Dinner was salad, a hot pasta dish, chicken in some type of sauce, and salmon in another type of sauce, all prepared by a local Italian caterer - and can I just say yummy! What was also amazing was that there was someplace for everyone to sit down at a table and eat their meals - tables all through the gardens, by the pool and fountains, inside, outside, you name it. There was a live auction which raised quite a bit of money - some of the jewelry went pretty high, as did the 2 dinners for 10 at the Rice’s home. This place is beyond description - and we only had access to 2 floors of it. Wish I could have taken a picture of the mansion for you but no cameras allowed. All money raised is being used for local BC patients, so it was nice to support such a worthy cause. I even won a doorprize - a beachbag with a towel, photo album, etc. And I spent a lovely evening with my sister, daughter, DIL, cousins, and saw several friends and acquaintances there. And the weather was beautiful to boot. A great time was had by all! Here is a picture of my DIL, cousin, sister and me before we left [image][/image]
OnlyGirl, how was the Thursday nite out?
Am making final preparations for DH's 50th bday party on Friday. Looks like about 200 people will be coming. Please say a prayer for good weather! Thank God for my BIL, nephew and son who will be roasting the pig, my SIL for ordering all the salads, my DD and DIL for each making something, and for dear friends who will be there Friday afternoon to help set up and make sure everything is OK. And, more importantly, they will stay until it's over to help clean up! Will be happy when this is over......and am very thankful that I'm starting to feel better and hope to have enough energy to do what I need to do to pull this off! DH has been SUCH a blessing to me not only through this but through many things over the last 29 years - he so deserves this party!
Have a good week and thoughts are with you all as you belly up to the bar or recover from your last HH!
Diana

Good Morning!

Hope everyone is feeling a little better today.

Cynthia hope that tongue clears up...it must be difficult to eat.

Pmarsh sorry to hear about the nausea..hope you feel better real soon.

Melissa heres hoping those counts come up quickly and that the bladder infections clears up.

Diana, your party sounds fabulous! Bet you had a wonderful time and your picture is great. That must be your sister standing behind you...quite a family resemblance. The party for your husband sounds wonderful and it is so nice that you have people helping (don't you overdo). Does you husband suspect anything?

3boys4me, good luck today at the bar.

Well girls, I think I might be having some lymphdema. Noticing my right hand is a little swollen..any ideas on what to do?

Hugs to all of you...as said before....I don't know how I would have made it this far without all of you!

Nancy

Had my 3rd tx today. They were still concerned about my feet but went ahead with treatment with a reduced dose of both the taxotere and the xeloda and a warning to quit taking the xeloda and call right away if I develop more sores on my feet.

It's 9:30 pm and I'm so tired from the lack of sleep last night from the steroids that I'm going to take the doctors advise and take a benadryl right now and try to get some zzz's - so good night ;-0

hey y'all, just checking in. i'm like patti --- i don't do shout outs much, but i read every post and pray for you all.
still pain in my left side, mouth feels yucky, weak and tired.

just found out my best friend from high school, Stacey, has a brain tumor. would y'all lift her up as well?

rosebud - thanks for that ispiring story. Can't get enough of those!
3boys4me - I'm glad you were able to go ahead and get your treatment. Hope your feet cooperate this time. Will you be up to our gathering on Sat.? I'll cross my fingers!
playwriter - have you spoken to your onc.'s office about this persistent pain in your left side? Hope you get some relief.

I am fianlly able to believe my throat will survive after all. Still eating softer foods, but have definitely got my appetite back!
I posted this late last night on the general chemo board, but really wanted to post it here for my March sisters. I think it is eloquent (especially coming from a male and a doctor!) This is poetry from - of all places - the Journal of the American Medical Assoc. (JAMA). It seemed incredibly loving and comforting to me.

After Chemo
Come you home now, love:
Come you home
to bless our bed.
Grace me
with the scent
of your jasmined hair
and leave behind
the bare stench
of chemistry.
Come you home,
and let me
pamper you
with strawberries.
Leave behind
harsh latex
and burning needles:
sweeten your tongue
with coriander.
Come you home,
and be lovely
in your battered bones,
and let the doctors
not singe again
your sullen marrow.
Come now, love,
and warm our bed,
and be
the living border
against
the quickening dead.
Come home now
and let me rub you
with oil
of sandalwood.
Ronald Pies, MD
Lexington, Ma

Lisa

Rosebud, I had a very similar conversation with my next door neighbor a few days ago. First she had asked my son if I was okay. I work different shifts, so it took her a while to notice I wasn't going to work. Apparently she had bc 10 years ago and got a mastectomy, but no chemo. She is doing great.... a 10 year survivor!

Lisa, the poem made me cry, too, and I already read it to a friend over the phone. I'm glad you're feeling better.

Melissa, hope you kick this infection. It's very threatening when our white count is so low. May God grant you peace.

Patti, God is definitely in control. Rest in that knowledge. He is so much smarter than us.

Diana, LOVE the pic. You are all so beautiful.

I pray for you all and just hate all the trouble we're having with SE.

My white and red counts are down again (as always) and I chose to take the shot in the stomach for the first time. I must say that it barely burned at all! iT SEEMED LIKE MY STOMACH WOULD BE MORE SENSITIVE THAN MY ARM, BUT i WAS WRONG. Grrrr. I am SO over that cap lock. I am about to pry the plastic off that key.

My ADA was approved and my company is saving my job for me until September when I should be right at the end of my rads.

God is so good and if you watch you will see Him working even in the midst of SE and feelings of hopelessness.

Love you all,
Miss S

PS Max... thanks for all the shout outs and I did send you another PM.

Lisa
Loved the poem - thanx
Miss S
YEAH! Soooo happy your ADA was approved - don't need to be worrying about work now too.......
Patti
I am not sure about rad-was told I did not need it, but after the Tumor Board reviewed my case there are several Drs who think I should have it - need to meet with the rad onc to see what the deal is - I was NOT planning on it and do NOT want it
Diana

Good Morning!

Playwriter...Hope the yucks leave you soon...I will be praying for your friend Stacey.

PMarsh, so happy you are feeling better. Good luck with you appt with your rad onc. I was orginally told not on rads...the SNB was negative during surgery but further test showed a micromet in one node...some talk of going back in after chemo to remove all nodes and then they might say rads...I just don't know and really am trying to not think about it right now. Your statement is so true...."There is an end......God is in control"

MissShapen...Yahoo!!!! ADA approved.

Girls, please let me know who will be visiting the bar next week.

Prayers and wishes for everyone to have a wonderful Mother's Day Weekend!

Nancy



Rosebud...that is such an uplifting story about your neigbhor, thanks for sharing. My SIL had BC 30 years ago, had a masectomy and rads and has not had any reoccurence.

Lisa, so happy that your throat is feeling better. Thanks so much for sharing the poem...it is beautiful.

Diana, I don't want to do the rads either. I had appts with both surgeon and plastic surgeon today and found out news I really didn't like. Apparently, they will radiate the whole chest wall of the cancerous breast (I was thinking just the node area under my arm). The other thing I got was that I cannot have expanders exchanged for final implants for at least 3 and preferably 6 months after rads! And I haven't met with the rad oncologist yet, either. At least I am feeling better from the chemo last week.

On a positive note, some people from my church are holding a yard sale benefit for me and the girls next week. I dropped some stuff off today and was amazed at the outpouring of help and stuff. There was a woman dropping off stuff that read about it on Craigslist and another woman who I have never met who is donating a BUNCH of her time to help sort and receive donations (among other things). God is truly blessing my family. Even though cancer sucks, there are some truly wonderful things that have and continue to come out of it.

Lisa, my case was presented to the tumor board so everyone kind of agreed what needs to be done with me. My surgeon has called it correctly all along and it is definitely up to the plastic surgeon when the implant exchange takes place! I had 3 positive nodes and my tumor was 4.6 cm. All that adds up to rads after mastectomy (actually kind of puts me right on the cusp). I am so glad that you are getting such good support! You are right about good vibes can't hurt! I will be joining you for TAC#4 on 5/23. Here's to minimal side effects and all good days!!!!!