Taxotere is to hard!!!

chiquita

Shonda and Jrgolomb...my chemo brain is getting better but for some people it will last about a year or more...read more about that on Dr. advise questions and answers....

Texas357

I was doing research on the chemo brain yesterday -- I couldn't find any timeline for it disappearing. It's driving me crazy because I'm just not as sharp or on top of things as I normally would be. Not fun.

nelia48

I just couldn't help but come back to this thread of posts just to see how all you girls are doing!  I finished my chemo on Dec 3.  Everything you have all described brought back all the memories of going through those horrible days.   I just could not eat anything at all.  I think I lived on Cream of Wheat cereal and chicken noodle soup!  The chemo nurse suggested Carnation instant breakfast drink when I finally told her I was eating nothing.  The chocolate seemed to be ok for me.  I was also on Prilosec for that awful acid brick that would wouldn't leave my stomach!  I also had the chemo brain and couldn't spell, etc.  Could hardly form complete sentences!!!!!

I really didn't think I'd make it through, and now I wonder how I even got the strength to go back for each treatment.  So I know you all wil make it ---- because I did!  You go girls!!!!

Texas357

Thanks for posting that nelia48! I'm on the Cream of Wheat and oatmeal diet, and Prilosec is also be morning companion. Good to know that this all WILL go away. When did you start seeing glimpses of the "old" you?

rosesinwinter

Yeah Lena!!

 I just dropped back in for a moment at work...and I am SO happy that you did OK with the first chemo!  So...the journey begins, one day at a time.  And all of these great women on the boards will help to carry you through.

Your passions make me smile - I have 2 daughters who were major Star Trek fans growing up who also went through lengthy periods with SIMS stuff. My husband is a computer science prof with the same tendencies - but I think he does not have the creative bent that you do (actually, I KNOW that he does not have that creative side!!)

To all of you with chemobrain,  a lot of mine has resolved but there are lingering traces. At those times, it is essential to have a sense of humor. As the advanced practice nurse at my Survivor Clinic pointed out, "I think it is the women with the highest cognitive function to begin with who feel chemobrain the most". And so, there is a compliment for all of you to think about!

larenels

I had the same symptons too. Then I got smart. I hadn't used herbs in years but I pulled out my books. The hemorids were bothering me and I wanted relief. I found that Psyllium healed your bowls. So I sent my husband to the heath food store to buy it. I took two capules in the morning and at bedtime. In ten days, my bowls started to feel normal. In the process, I had another infusion of taxotere. This time, I had no rash or shingles.

So I take it everyday. One capsule in the morning and one at night to ward off hemorids. I found on every infusion from then on. I did not have the rashes, shingles, super dry skin, and my nail started to grow healthy and normal. For some reason, my hair stopped falling out. 

It has worked so well. I decided to make it available on my website: www.RebuildShatteredDreams.com. It's hard for chemo patients to get out. 

paweed

Lena, you crack me up and I loved reading your "ramblings"

As far as the chemo brain goes, that really sucks but it does go away, mostly.  I remember wanting a carrot and I could't get the word carrot out.  I could describe it , where it was and all that but the word recall was just not there.  I am not 5 months out of chemo(wow has it been that long!!??) and the brain is mostly back.  I was unable to grocery shop by myself.  It is such a joy to be able to do that now.

well, my dears, Survivor is on and must eat popcorn and watch with my 10 yr old.  It is a tradition. 

funny, a survivor watching Survivor!!!!

rosesinwinter

Paweed-

Wow, you bring back interesting memories from last year!  I would be SO overwhelmed at the grocery store sometimes, I would just stand there and cry a little. Too many decisions after only a couple of aisles!!  It does get so much better, really!

Lena

Thanks Chiquita for the suggestions.  Yes, I do drink plenty of liquids: my personally mandatory two cups of coffee in the morning, then maybe 2-3 cups of regular old Lipton tea in the afternoon, a cup or two (on rare occasions 3!) of herbal tea (Celestial Seasonings Sleepytime) in the evening. I was never a big water drinker -- I do drink it occasionally (every 2-3 days maybe) I feel like having just a plain glass of cold water so I do, but normally when I prefer a cold drink (summertime usually) I go for juice, which I have instead of tea. It's still "too cold" here for me to be in the mood for cold drinks or start jonesing for juice, so for now I'll stick with mostly coffee and tea with the occasional glass of plain water.

 

My favorite juices (in order) are pink grapefruit juice, V8, prune, grape, apple and pink lemonade. Also like pineapple and pine-strawberry-banana juice too. Given what I've been reading on here about Taxotere and mouth/taste issues, when the time comes that I start jonesing for juice again (another month or two), I've thought  to just buy prune, grape and apple juices only, and not have the citrusy or tart ones. (Um wait lemme think...Candida albicans, the organism that causes thrush, is a YEAST....and since I used to maintain stock cultures of it (on petri dishes and in test tubes!), I know they like lower pH environments...citrus and tomato based juice is acidic, higher pH, so maybe I just might indulge in a little pink grapefruit or V8..eh, well, I'll see how I feel then!)

 

But yes, with all that coffee and tea drinking I'm still doing (chemo has yet to change my normal liquids consumption pattern), YES I DO visit the bathroom a lot.  However, this is the first I've seen anyone suggest about not sleeping for more than 4 hours and using an alarm clock to go to the bathroom....y'know, at this point, with all due respect, I think I'm going to pass on that one. I hate the alarm clock and I NEED to get more than 4 uninterrupted hours of sleep each night for my MENTAL health! The least I can do with is 6, optimally I get 7 or 8. I do pee before bed though, and I also pee again as soon as I get up -- this was before chemo and so far has stayed the same after chemo too. So far that seems to work for me anyway -- I haven't had any problems with urination at all.

 

I think I AM starting to feel specific Taxotere side effects a little bit now though -- not  horribly like you did, chiquita, not yet at least, and I hope it doesn't get any worse -- but I am noticing a couple little things, like yes, my tongue is a little sorish, numbish and my mouth has something of a slightly weird taste to it -- but it's all only very slight at this point (and the taste in my mouth is not "metallic" as I've heard described: I don't know how to describe it actually).  Also, while in the supermarket yesterday, I decided I didn't feel like eating salad and crossed all the salad stuff off my list without buying any. What's weird to me about the salad thing is that the last time I ate salad, I ENJOYED THE HELL OUT OF IT -- it's one of my favorite things to eat, and Wednesdayt afternoon I was actually CRAVING it, but didn't have any more stuff in the fridge to make any (which is why I had added it to the shopping list, which I made yesterday!). So it's not like I'd eaten it with "taxotere mouth" and found that it tasted bad and got put off to it. I just went from craving it to not wanting it at all in the span of a day.

 

On the note of "Taxotere Mouth," yes, I'm still brushing and gargling every day with Biotene toothpaste and mouthwash (I started the first morning after chemo). So maybe that's why my mouth weirdness is only minor. Oh, and yesterday in the supermarket I actually saw Biotene chewing gum along with more toothpaste and mouthwash. I was surprised because I bought my original stock of the toothpaste and mouthwash in a drugstore (3 tubes and 3 bottles each so I still have plenty), and had been looking for the gum too but couldn't find it. So now I have a couple packs of the Biotene gum.  :-) Normally I'm not a gum chewer but decided it might be a good idea to chew a little through chemo in order to encourage the salivary flow to avoid dry mouth. I'd gotten two packs of Trident sugarless when I couldn't find the Biotene in the drugstore, and I'm not even half done with the first pack yet, but that's OK.  Anyway my mouth doesn't feel DRY at all, hasn't yet anyway.

 

Now this Chemo Brain thing -- is that just Taxotere or other chemos too? Because in addition to Taxotere, I'm also on Adriamycin and Cytoxan.... and I've been starting to feel Chemo Brain, I think, since Sunday, definitely in the last couple of days, and I HATE IT! My INTELLECT is what makes me "Me," and taking that away is striking at the core of my essence -- without my sharp mind, I'm not me anymore, and I have no desire to live on as a physical body in name only. I have, or should I say had, a memory that astounds people but which I have come to depend upon, because everything I do which has meaning builds upon it and branches off into related details.

 

Eeeeesh!

 

(New "news" since last post -- ugggh I got my buzz cut on Wednesday, and yesterday before the supermarket, my custom wig earlier than expected. Funny: when I left my apt yesterday I was wearing my "quickie" wig, but when i came home I had the new one on!)

 

~Lena.

Texas357

Latest symptom for me (2 weeks after my final taxotere): my fingernails have started oozing foul smelling liquid. Oh boy.

janet11

Gad... this all brings back memories.  I was on TCH-6 ending 2 years ago. 

When my fingernails started oozing (and not all did), I put bandaids on them to collect the liquid and to keep me from accidentally catching them on something (they were sore). I did lose a couple toenails, but nothing more (and those weren't gross).

It took me about 2 months after treatment ended before I could finally stop the prilosec and tolerate coffee and chocolate again.  But my chocolate-tooth never quite came back -- a little goes a long way now. And it took several more months before I could tolerate much citrus fruit and anything acidic again.

But it does come back, and the food/taste problems on Taxotere are now just a faint memory.  Good luck to you all getting to that point.

Texas357

Thank you Janet. It's nice to here that we will emerge on the other side eventually!

chiquita

Hi Lena, is great to see that you are doing good...I know some people that never had to many SEs on Taxotere, but I had a lot and I still have a some...but that is just me....

My Dr. told me to go to the bathroom every 3 or 4 hours because the chemo sits in your bladder and cause some damage to the line of the bladder... but I do not sleep to many hours and going to the bathroom at night did not bother me...

Chemo brain I have but is more remembering names and phone number, and if some one call and live a message I have a hard time getting the number...if the machine says 3 or 7 I hear 3 and put on the paper 5...

My friend survive of cancer 7 years told me the chemo brain for her last about 6 months...

You can read more about chemo brain in the Ask the expert  Doctor advise part in this home page.

To all ladys good luck and a good weekend...lots of love and xoxoxox

lindatwo

Did you all lose your sense of taste with your first treatment, or was it cumulative?  I've had one treatment with T/C, and  I have the frustrating metallic taste, and my tongue feels kind of tingly, but it seems to get better each day.  The first week nothing tasted right, and just the mention of candied yams sent me running to throw up.  I've kind of lived on cheap instant mashed potatoes, organic fresh vegetables, and popsicles.  On the upside, maybe we'll all end up liking some of those things we hated before?  I have a friend who got over her life-long allergy to chocolate and strawberries, and now 5 years after chemo is allergy free!

Texas357

My loss of taste was almost immediate (yams and sweet potatoes have made me nauseous almost from the start of chemo and they are one of my favorite veggies). I also developed dry mouth after the 2nd treatment, and 2 weeks after I finished it is only beginning to ease up.

I'm anxious to get rid of the bad taste in my mouth that I carry around 24-hours a day.

KerryMac

Oh, I have the "burnt" taste too, it is awful. And I am still sore and achey 11 days out of Tx #2. Tylenol is my new best friend.

jrgolomb

I have a very painful sore that pops up day three or four of the taxoterribles.  It is right next to a tooth that had a root canal.  It has faded somewhat, and my tongue is always sore.  I have been drinking coffee, in fact I have been eating and drinking everything in sight!  My family is amazed at my appetite.  I am amazed at my appetite.  My stomach actualy growls and I feel light headed about every tow hours.  Woke up at 3am feeling hungry!

CHiquita--I have an issue with getting mixed up about stuff......Where I work I have discovered I have been locking the door when I mean to unlock it and viceversa......Left my door unlocked all night once and got a note from the janitor......Don't even remember doing it!

Bumped my toe in the middle of the night---that sent shooting pains up thru my inner core.  ACK! and #%(#%#(%#(!!!!

Texas357

Latest taxotere side effect is extreme muscle burning when I try to exercise. After my last treatment, I just figured I was out of shape. But in one week's time, I'd gone from being able to do 10-20 minutes on the exercise bike to about 30 seconds before my thigh muscles felt like they were on fire. Trying to walk -- my muscles grow rubbery after a few feet.

I'm an exercise and healthy eating fanatic, a healthy weight etc. This has got to be chemo-related. I'm going to ask my oncologist about it when I see him next week.

faithmena4

I am on Taxotere # 8 with 9 coming up end of this week and I am just about done...very well done. Lots of side effects - leaky eyes with skin irritation , mouth sores, neuropathy on fingers and toes,muscle pain, back pain on and on.....I am doing with in combination with carboplatin . I am seeing my Onc Tuesday and will request to take a break. Wish me luck ladies. 

Kindergarten

Hi, there!!!! I was on taxotere 4years ago and you are right, it is hard, but it really kicks the cancer's butt. Hang in there!!!! I remember my onc adjusting my dose, because I was having awful headaches. God bless you, Kathy

chiquita

Hi Lindatwo my sense of taste was the first SE I had and still have, is awful not be able to enjoy food...

Jrgolombo I have a very painful spot on my right side close to my hips and it comes when I go for chemo and stay for a long time, the only think that help is Tylenol 3...

Texas357 I have the same muscle burning in my legs and is very hard to go up and down steps, my oncologist says it will go a way soon...is very painful....

Faihtmena4 Good luck and if you do not take a break your chemo will be over sooner!!!! How many more you have?

jrgolomb

Yes, chiquita--Tylenol 3 seems to do it.  My oncologist had me switch between aspirin and tylenol.  Anybody else?  I have read suggestions that say to stay away from aspirin.  Vicodin didn't do much for me especially as I am being treated with the taxoterribles!

ktym

Texas357.  hard to tell, but it sounds like you're describing taxotere myopathy.  Happens to about 5-7% of those who take it.  Effects long proximal muscles more then distal.  They don't know if it is the taxotere, the steroids they give you for it, or the combination of the two.  They also don't know if it is a problem with the muscle itself, or the nerves going to those muscles.  Studies are even more vague about how completely this ever resolves.  Most reports indicate it takes at least 6 months in those that will improve.  Hopefully this is not what you're dealing with, but I get worried about people being too cavalier about reassuring us this will all get better soon, because in some of us it doesn't.  I'm over 2 months out and have only slight improvement in mine.  It still limits my activities.  I will warn you that what everone does agree on is that "pushing it"  (unlike how we usually think of conditioning our muscles) only makes it worse. You don't want to lose what you have, but be gentle with yourself.

Texas357

Yes, it is just the proximal muscles, now that I think about it. My calves haven't hurt at all but my thighs burn, for example.

I know that exercise will help me fight the radiation fatigue in the coming months. Also, I need to prepare for further reconstruction surgeries by getting in shape. This is so frustrating!

ktym

I feel for you.  I have found it to be very frustrating. 

ShondaE

I had my 3rd dose of Taxoter today.  I am doing it every three weeks.  Has anybody had dibilitating headaches while on this.  My headaches started after the first treatment, so the dr took the Zofran away thinking that is what has caused it.  No such luck. 

I told her about it again today and she is now ordering a CT scan of my head to check it out.  I swear this is kicking my ever lovin butt worse that A/C every 2 weeks did.

Shonda 

Kindergarten

Hey, Shona, Yes I had horrible headaches while I was on Taxotere. My onc did adjust the dose, a little better. Yes, and they did a brain MRI to make sure things were O.K.. They were. Good luck and God  bless you, Kathy

chiquita

Hi Lena...how are you?

God Bless you. Chiquita

Texas357

Well, I'm up to 9 loose fingernails being held on by bandages for the next 3-6 months. Oh boy, huh? The bandages mean I can't feel anything with my fingertips, and it's making me a real klutz.

Now 3 weeks after my last taxotere treatment, and I still can't taste anything, my muscles still burn when I try to move beyond a snail's pace, and my hair doesn't appear to be growing back very fast.

Feeling a little frustrated.

chiquita

Hi Texas357, is the same with me...my hair is not growing and my muscles burn and the joint of my legs hurt...the nails are black and half loose...my feet is very sore and swells up a lot, my oncologist gave me pain killers and a pill to pass water...but still 4 days and still the same...is all this from Taxotere?

Yes frustrated is the word!!!!