September 2013 Chemo Group

For everyone with mouth sores, GNC store has new chewable LGlutamine tabs. They are berry flavor and I have chewed one 1 day prior and 4 days post treatment with ZERO mouth sores!! So much easier then mixing powder etc..just throw them in your handbag and you are ready. How do you all suck on popsicles during treatment? Just curious? Do you bring a cooler or something? I have had 2 AC treatments so far with no mouth issues,and I suspect it is from the Glutamine.  It is great for muscle recovery as well. Maybe that helps with bone pain  also?? Research it ..lots of info about the supplement on the internet.  Hope this info helps!!

Starting chemo next Thursday so I guess that puts me in the September group. Very anxious. Port goes in tomorrow

Martie, I'm doing TC. As far as neuropathy, I'm not positive I've had it, but maybe? I had some numbness in the fingertips with first infusion, and with second both my right hand and foot just feel off, swollen, tingling perhaps. Both times I find I have been powdering the palm of my right hand as it seems to get irritated using my mouse. is that weird? But it does seem to pass also (so far). I might be a little slower transcribing overall also, just with everything. As for which site, I think I will be posting on this one for the time being.

After you finish AC, how long will you be on Taxol?

Welcome to everyone new here.  I am sorry there are so many here, but grateful to be surrounded by such wonderful women who pick each other up when we're down, and share such good advice.  I feel very ready to go to my first chemo treatment today, and I just wanted to say how grateful I am to all of you who have shares side effects, tips, etc.  It's easier to go in knowling a little more what to expect and to be able to preplan with things like ice to help ward off some things.  It seems the docs here don't share that with you; you're on your own to figure it out.

My chemo days all fall on what would be my shift days for work if I was not on light duty.  They asked me to stop in today so we can take a group pictures of us all bald (and not under the influence of alcohol).  I needed to stop by anyway and fill my cooler with ice, so it'll be fun to have that last blast of fun and support before I head in to the chemo bar.  Hoping for a minimal side effect weekend to you all.

Oh...and when I workout, I like to wear skullcaps (pretied bandanas) on my head.  I ordered them from bandanaworld.com.  I also ordered ones with flames on them for all of the guys that shaved their heads with me.  I ordered on a Saturday and they were delivered on Monday...2 days later.  Awesome customer service.  I just ordered more!

I am so very very angry today. Maybe it is the denial of the whole situation wearing off and me finally going through the motions of the greiving process or the fact that I do have something to be angry about and something else to worry about. Come to find out that Taxotere DOES carry the possibility of permanent hair loss. A MINIMUM of 1 in 16 people. Not all of those never regain a single hair on their body but a great many end up with male pattern baldness type hair. I have heard nothing but "you WILL get your hair back". This is a known side effect and so why aren't we being told this? From what I understand Taxol is a very comparable alternative and even carries a higher success rate in some studies. Why wouldn't they give us a choice?

Maybe I am just irritated because I've decided to shave my head completely down tomorrow. It has just become a mess with hair falling out everywhere all the time. I'm going to have a few beers (I don't care if I am not supposed to) and just shave it off. 

Maybe I am just depressed because no one seems to care. My family and friends are crap and so I am having to go through this all on my own. The only person who has helped me with anything at all is my babysitter. I even set up a mealtrain account and paid the $10 to do the additional tasks like taking my kids to school and taking me to chemo, and no one has volunteered for anything. It's funny how many people say "If you need anything at all let me know." and then when you say "here is what I need" you hear nothing but crickets in response. I mean, I already had my hands full before all this. I have an 8, 4 and 3 year old and my oldest is special needs. I thank God everyday that that I have in-home nursing for him because I don't know what I would do without it. The chemo has made me weak to the point that I can barely lift him now. My nurses help me out once in awhile too which is nice. One does my dishes when I am at class and if it wasn't for her some weeks they wouldn't get done at all. I hate that my family and friends and the way they are but I guess I know where I stand with them. Apparently I am going to have to seek out and depend on the kindness of strangers if I am going to get any help at all. That is very scary with little ones though. I have always been so overprotective of my babies. 

Sorry everyone, I have just been sitting here crying and can't be my usual chipper self. I just needed to vent

MamaStewart,

First off (((((big hugs))))) we all have days like this. It took me weeks to get over the docs blowing me off last year. Still not completely past it.



It is frustrating that you have to find out all of these "little" things on your own. I did a crap ton of research to the point I am surprised my docs didn't come pull the plug on my comp. mi told them all to out my first name down as PITA (pain in their a$$).



I knew taxotere had something like up to 7% getting perm hair loss which is one reason I cold capped. If it helps,for reference though I still have hair everywhere. Even places I don't want it. My arms and face are still fuzzy. I shaved my legs although not as often. And I am 5 1/2 weeks post TC chemo and still have eyebrows and lashes, and chin whiskers with a fuzzy upper lip too. I also have hair starting to grow back where it had fallen out. I hope that gives you some encouragement?



I don't know why they pair certain drugs with others and they don't give you a choice. I have seenmthingsmlike ACT done with taxotere instead of Taxol, so they do mix them around sometimes. I do know that taxotere is a water soluble taxane, and Taxol I believe has a higher risk of permanent neuropathy. But yes they are both from the same "family".



Speaking of, I am sorry yours is not stepping up for you. Where are you? Can I bring or send dinner? I can have pizza delivered to go with your beers!



Sorry you are so frustrated. People don't realize how much effort being your chipped self and having a good attitude can cost us some days.



All of us here care and understand. Vent anytime, but know you are not alone in this even if we are only there in spirit.

Lynne

So true lighthouse I researched my butt off. And while my onc told me a lot of these things he was not super specific. Like the heart damage that could happen. He never said the words congestive heart failure. My first visit he said I could do easy chemo(TC) or hard chemo (ACT). I said its chemo WTH is the difference!

MamaStewart,

Couple other things I have heard is a group called "Breast Friends". If there is a group of them in your area I think they help others with things they need.



Also Www.cleaningforareason.org offers cleaning service for people going through chemo. I think you can get 4 cleanings for free so you might want to check it out. We use paper plates and bowls, plastic silverware and cups for a lot of meals and snacks at our house. It's not glamorous but can't keep up with the kids. This way they just throw it in the trash and not as many dishes!



Your chemo center might have info on groups for rides too or your county?



If you PM me where you live I will try to do some research and see if I can round you up some help. Also talk to the school counselor and principal. The teachers at my school help with the kids sometimes and have even brought meals. They could maybe stay free after school if they have that kind of a program. I used to work with some of the clubs and programs after school like karate, chess, etc... When we had families going through tough times some of them offered scholarships to the kids and it was great for the kids because it was something fun. Cancer doesn't leave a lot of spare change for stuff like that.



There are plenty of resources out there, we just have to match you up with them.



Keep your chin up. You got this, even if it doesn't seem like it today

Hello everyone! Seems this forum has really grown since I last posted an update. I'm at Day 15 of first round and I'm doing well. I did have achiness and an elevated temp of 100.8 on Day 12 but no other signs of illness. MO prescribed Levofloxacin 500mg daily for 7 days. I've not seen anyone else precribed that so I was wondering if this is a new protocol. Since starting on it I haven't had any more fever and I've been feeling more "normal". The zantac I take at night keeps the heartburn and empty pit/gnawing discomfort away which then helps me to sleep so much better. I still have strong food preferences, but I've been able to drink lots of water and tea without problems. I never had mouth sores and I didn't chew ice during chemo. I did rinse my mouth often with a baking soda water solution for the first week after chemo so perhaps that helped. Still no signs of hair loss. I felt more fatigued yesterday, but fine today. I'm hoping for no more problems for the next week so I'll be stronger to deal with Treatment #2 which is scheduled for Sept 27th.

Hoping and praying for the best for you all!

MamaStewart, Well I absolutely understand about the underlying part of this that is upsetting you.  I too want more children (just turned 34 last month with a 21 month old) and this aspect of the cancer has absolutely crushed me more than others.  I will say that my onc is very supportive of me doing the Tamoxifan for 2 yrs and then trying to get pregnant.  I would finish out the five (or ten) years after delivery as I understand.  2 years is an easier pill to swallow than 5 as I would be 39 as well.  When I was just diagnosed all I could think of were future children and it was crushing. But I am trying to take this one step at a time ... now it is get through chemo first.  Not easy but it is helping me.  I am working hard on being grateful for what I do have ....and not listening to a lot of insensitive (but probably well intentioned) comments.  

And I am in school too - everyone thinks I am nuts for not taking medical leave but I think I need something to do that has nothing to do with cancer and where no one knows/or cares if I have it.  Maybe wishful thinking - I start next week.

But I would check out the Young Survivors Coalition - if nothing else they have a lot of info for our age group (fertility, dating) and you might find a local chapter that can work around your schedule.  We just meet for dinner once a month and I take walks with some of the girls now that I know them. 

Venting and crying are good releases especially with all you have going on.  We love your chipper self but rest assured that you are putting into words feelings I have every day and it helps me to know that I am not alone in these thoughts. 

I need some advice from those of you going before me. I should be among you, but I developed a surgical site infection which is delaying my start of chemo. BS thinks I'll be healed enough to get my port the first week of October, and so will start my first of 4 a/c treatments Wednesday the 2nd or the 9th. My husband's annual hiking trip with a couple college friends is scheduled for the 10th-13th.



I have 2 LARGE dogs and no yard, so they have to be walked 3 x day. I don't know whether to ask my husband to cancel (think its a bad idea, he's going to need a break) or get some help and have him go. Without family around, I would need to hire someone. Do you think I need someone to stay over? Will I primarily need dog help or will I need me help? What if I stock the house with easy microwave food? Given that my course of treatment has been so rough, I'd appreciate less input from those who ran 5k a day 2 days past surgery and more from the average experience...

Hi Everyone...

38tooyoung: Thanks for the tip on the chewable LGlutamine. I am going to run out and get some.  I've had one treatment so far and my mouth is sensitive (and taste buds are funky) so I want to steer the idea of mouth sores away.

VickiJo and Millsy: Hang in there gals. I was right where you are a week and a half ago. Terrified out of my mind.  You will find the courage to walk through it...it is not easy but you will. get. through. it. I had AC and within hours after had a tough chasing of nausea.  Do what they tell you to do...listen to your body...act quickly on the anti nausea.  Now that I have walked through round one....I feel a bit more confident about being proactive in round 2.

I was not told about taking Aleve and/or Claritin after taking the Neulasta shot.  Did it really help?  I was slowed down a bit by the shot...but it was able to get around. I was more easily fatigued but really it wasnt too bad.

The taste in my mouth is annoying me...taste buds are definitely off. Bought some Biotene and rinsing with that.

My port site is healing and its only been a week.  I am just getting little stabbing nerve pain and its ANNOYING!  Does this settle down?

So glad I have found this site. Been getting some great tips to use on Round 2 next Friday....dreading it....but a necessary evil.

Thanks for all the imput...it is so helpful.

I am day 12 after first TCH chemo treatment and still feeling extremely exhausted and that ugly sick feeling. I dont know what to do anymore to help me feel better. docs and nurses keep saying that they dont know why i thsi has hit me so hard and why i havent "turned the corner" as they say most turn the corner on day 6. Which unfortunately doent make me feel any better just more concerned and frustrated. I have had to battle the diarhea since day one and today is the first day that I havenet been in and out of the bathroom. I have tried so many meds to help but doesnt seem to make any difference what I take nothing takes away the nausea completely. And nothing takes away the ugly sick feeling. I have an appt with mo on monday to discuss my treatment situation and I really hope to get some reassurance or answers. Hopefully I am not asking too much or expecting too much .....setting myself up for even more frustration, stress and concern.

I am trying to stay positive but I am losing strength......anyone have any suggestions or advice that has helped them feel better....anything is appreciated!

Thank you for letting me vent.......Thank you for listening!

I wish everyone the best and I will keep you in my thoughts and prayers!

Traci