Starting Chemo July 2013

zimmy

Help Please!!
I have had problems with neuropathy since my very first dose to TC, actually it started the very first day with tingly toes and face. It never went away.

My MO  reduced my dose by 25% for round 2 and it didn't seem to make any difference, I still have tingly face and feet that are also numb feeling.

I was due for my 3rd round on Friday and MO thought we should stop tx as reward vs risk was to great, if I was going to have numb feet for the rest of my life. He started me on Letrozole.

At first I was kind of relieved but now I am soooo scared of not finishing, its all I can think about.

Should I call and tell them I want to do tx anyway and take a chance on permanent neuropathy?

This disease if one hard decision after another.

Thank you all for any input
Hugs to all 

Zimmy

angelanature

Hi All,I so hate Mondays,anyone that knows me wouldn't believe how dependant i've become on my hubbie of a couple of years. I was a single mom for 8 yrs before this,very self dependant,but now I can't stand when he goes to work,i get all weepy and just lay around waiting until he comes home,this is not me. Anyway Zimmy,did u get your oncotype dx done? You have no lymph node involvement,you had a double mastectomy,and have er+tumor,all good things.Neuropathy is no minor thing so if my oncotype was low i would probably discontinue as well,just my opinion on what i would do.I'm getting my first taxol on sept.4 and I'm scared but heard ice bags to hands and feet can help,I had a macrometastis to lymph node so I have no choice but you might be ok if your reoccurance score is low. Angela

zimmy

Angela Thank You for your reply. I did have my oncotype done and it was 34 ! That is one of the reasons I am so scared of stopping  

momx2

Hello everyone , sorry havent commented in awhile . Ive read all your post and mirror a lot of what all of you are feeling , this can be very discouraging but we have to continue and see it through to the end as difficult as this all is .

Ive been so sick and weak Im afraid to think ow Im going to feel after AC #4 this thursday.

{{{{{{{{HUGS}}}}}}}} to all of you , I pray for all of us for strength and health !

angelanature

In that case Zimmy you should really think hard about stopping,34 is a scary #and i would get a second or third opinion,maybe there is someway to prevent neuropathy by slowing it down or breaking it up in smaller doses over a longer period of time. Ugh,that's agonizing and i totally feel for you.Angela

soriya123

Hello Ladies,



Do u take any supplement vitamin? Any recommendation what kind of suppplement n the brand. Right now I am taking Super B complex (Nature Made Brand). THANKS

Nocompromises2013

Soriya I am taking vit D and also B6 100mg to help stop neuropathy



Day 6 and coming out of the blah !!

TC#3 definately hit harder than #1 and #2. Roll on #4 then I am DONE !!!

I admire all u AC +T ladies - fortnightly must be grueling plus all your weeklies afterward .... Congrats to all those nearly finishing with the red devil YAY. and good luck with your first taxols -

Zimmy - hard decisions. Have you thought about Rads to mop anything up instead of the risk of neuropathy ? We don't do oncotypeDX here ( well my onc doesn't) - I have only the very minorest of tingling. But definately more so after #3 so it probably would get worse for you and it is the only Q my onc asks me - about neuropathy so they would be very concerned -

Hannariggs

Hi All, 

Zimmy-my treatments were altered also.  Instead of gettting 4 dose dense ac every two weeks, mine was adjusted to 3 ac and 1 cytoxin every two weeks.  My Dr felt that the risks were outweighing my side effects.  He was NOT going to alter it on the taxol though (12 x 1 per week), as long as I was not allergic.  If I am allergic we are finished.  My onco score was 44!  All we can do is all we can do.

Angela- We are on the same schedule.  Not looking forward to taxol ! So many steroids to take the day before infusion.  I will be bouncing off the walls!!!!  Still trying to recover from round 4, and I am the same.  WAS so independent, and now afraid to go anywhere alone for fear of something happening.  Still so weak..and yes, depressed.

Soriya- I am planning on starting vitamin b-6, b-12, and l-glutamine before I start Taxol.  I am also going to ice my hands and feet.  Dr wasnt real thrilled with the last one, but if it saves a part of my body(have lost so much already),  I plan on doing it.     

Cutiekool

Hello ladies, It's been a few days. Update. 1st chemo August 19th. A/c. S/E. fatigue, nausea and funky mouth. I have been having a lot of nausea and acid reflex. Today is the first day I really feel like eating. Has anyone else had that white pasty feeling in mouth? If so what did you do for it? Talked with onco nurse, she said possibly thrush..... See onco tomorrow. Also does anyone have extreme Sensitivity in the feet? Please tell me next round will not be as harsh....... Take care. I love reading all your posts.

lark

Zimmy- i'm sorry you're in this position. I was just reading an article on this site under 'Research news' called "weekly low dose taxol provides same benefits as higher dose". I see you're having taxotere so it could be different. But maybe you could ask about waiting a little while then having a small dose weekly. A second opinion might be a good idea if your dr can't ease your mind about this.



I start taxol on 9/5 so if anyone starts before me let me know how it goes. I'm not supposed to take anything the day before! Just steroids and benedryl in the IV. Still trying to get some energy back after the 4th AC last Thurs. My other se's havent been too bad so I'm thankful.



Sorry that so many of you are struggling with so many things! Hugs to all. Hang in there!

soriya123

NC and Hannariggs, Thank you so much for Vitamin info. Is it ok to take these vitamin during chemo week or after?

Nocompromises2013

Soriya - I take the vits everyday regardless of chemo

Will cease B6 maybe 3 weeks post chemo.

Will keep up vit D as its suspected BC ladies need higher vitD levels ( more than 75 instead of conventional 50)

Rambo50

Well, Firecrackers -

Looks like AC round 3 did a real number on my gastro tract!!! I'm scheduled for hemorrhoid surgery tomorrow morning. Unfortunately, this will set my chemo back two weeks :(:(



Lynn

LanaM

Lynn - sorry about the surgery and chemo delay, but hopefully the surgery will bring you much needed relief from the roids! We'll ll be thinking of you tomorrow! Lana

soriya123

Rambo - good luck with your roid surgery tomo, I hope its not too painful? (Hugs)

NC- Any brand of Vitamin D, or any brand should be okay? Thanks again.

Rambo50

Thanks ladies

If nothing else, it will force me to rest!



Soriya - I've been taking a B-complex vitamin every day, along with D (I was major deficient).

GraceB1

Cutiekool- chemo dries out your mouth, you can use biotine mouth rinse to get some relief. Grapes also seem to refresh my mouth.  I think a lot of us experience the heartburn. I'm taking prilosec daily and it has helped tremendously. Havn't had trouble with the feet yet but nausea is an ongoing problem. Zofran can really help but then I end up sleeping most of the day.  I can usually taper of off it by day 4 or 5. My second treatment was worse than the first but my third is easier than the other two. Who knows why but I'll take it and hope for the next round to be easier too. Everyone reacts differently. Just take care of yourself.

momx2

Lynn , good luck tomorrow .Sorry to hear about your chemo set back

hugs

Hannariggs

Good Luck Rambo.......hugz  and prayers........

Nocompromises2013

Soriya - any brand vit D as Long as it is D3 (cholecalciferol)1000IU - 25mcg



Rambo - so sorry to hear of your upcoming surgery and delays - my onc tried to delay #4 on me by 4 days cos she was on holiday - I nearly jumped the table on her in my disagreeance - she got the message and agreed I can have the treatment in her absence - amazing how we focus on set times scales / finish lines and any delays absolutely floor us - I was ropeable

Any Surgery is serious and I guess you need to understand that any risk of GIT infection needs to be dealt with rather than risk peritonitis, septicemia or worse.

I hope it all goes smoothly and you don't have too much delay

I think AC and TC have been looked at with varying frequencies ie fortnightly , 3 weekly maybe even 4 weekly I guess it is quite moveable if some onc's don't seem to mind stretching the periods between cycles to suit them too

Stay safe and infection free !!!

Xx

Karkar06

Good luck Lynn!

angelanature

HI All,Rambo that stinks but hopefully you"ll be painfree in a couple of days.Your new pic is amazing,I have that same tshirt,you look so strong and beautiful.Who knew when we started chemo something like hemorriods would give us such trouble? No one talks about the agony of constipation/roids but it's been my worst se of all. I have to go for a MUGGA scan today before starting Taxol,it scary they have to check my heart again after ac to make sure there's been no damage and i'm strong enough for the next chemo.Hugs to everyone,especially you Lynn.Angela

GraceB1

I forgot to ask my onc last week but I'm assuming no flu shot shot this year? Anybody know for sure?

angelanature

Hi Grace,Yes we do get our flu vaccine but when our counts r at their best,so for me tha would be on my off week. It's an inactivated virus so apparantly it's safe,certainly better than getting the flu itself.I would have all family members vaccinated as well.Angela

option

Zimmy, sorry to hear about the difficult decision. I also had numb fingers in first cycle, then tingling in legs the second cycle, tingling in legs and some parts of the upper body the third cycle. MO was open to discuss dose reduction, but I kept it the same. Reoccurance is more scary to me, and as long as the symptoms don't get a lot worse, I find it still manageable.

The tingling and nerve pain is probably worse around Day 4 and 5, and then gets better. Does anyone know if the neuropathy symptoms will get worse after chemo stops?

Mellie289

Good morning, Firecrackers! I've been off spending time with my mother but I brought her to the airport this AM and my guy is back to resume his nursing duties.

Once again this cycle, days 10-12.... nosebleeds, nosebleeds, nosebleeds. The worst of my life and far worse than my first cycle. I almost went to emergency Monday night when it wouldn't stop for over an hour. Called my MO yesterday morning and didn't hear back from them all day - I ended up calling again to  find out if there was anything wrong with my platelet cound from Monday's blood draw. It was fine, but I'm getting pretty ticked off that they aren't returning my calls when I am asking for my blood test results after one with a low WBC count also in a message asking on nosebleeds that had been going on for two days. We did make a little trip to urgent care last night after another one that went on for an hour and a half by that time. Since it wasn't a posterior bleed, it's just compression and suffering through it, I guess.

Anyone else having nosebleeds and getting advice from their MO? I keep thinking of someone here saying earlier that chemo seems to attack our weeknesses and I had lots of nosebleeds when I was younger and living with dry heat during winter time in Canada.

Sorry for the post being strictly self-focused. I'm so far behind here and have 5 pages of reading to catch up on - I'll be doing that later today to see how you all are fairing. I really need to get showered and to work right now though. 

zimmy

Thank You Ladies for all your input, its very much appreciated. It easy to get overwhelmed and lose sight of the goal so its nice to hear what you have to say and I value all of your opinions.  

Angela and Lark - I have a call in to my MO and checking to see if we can try and get this done either using another drug or breaking up the dose, I just want to finish.

NoComp- Rads not really an option as I had mastectomy.  Going to check w/ MO for other options/meds.

Hannariggs- So sorry you are going thru this as well ! I know the agony of having a high oncotype, I hope all goes well with the Taxol Tx.  I agree though we can only do what we can and our bodies can only handle so much.

Option- I started with tingly and numb toes also a tingling and numbness around my lips and mouth on the very first tx, it lessened slighly before the 2nd (dose was reduced)  but did not totally go away.  This is why MO is wanting to stop vs risking permanent neuropathy, but the thought of an reoccurance is too scary. If it doesnt get any worse than it is now It would be doable, but it has the potential to get worse with more tx's and I have read on here that some do get worse after chemo stops its called coasting.  

Wishing you all a good week and little or no SE

Hugs  

zimmy

Mellie289, I too have had the dreaded nosebleeds, and they are frightening.  What chemo are you taking ?  Mine started after  round 2 , day 4, 6, 7, & 15.  The first 2 I was able to stop in 10-15 min. the 3rd and 4th where much scarier the 3rd took about 40 min to stop and had lots of blood and blood clots. The 4th I was not able to stop in an hour it was a steady stream of blood as well as coughing up blood clots  (sorry to be so graphic). I got so scared I when to the ER ( told them I was on chemo and immunosuppressed so I could not sit in the waiting area, its was a saturday), platelets within normal limits , nostril packed, and D/C with instructions to see an ent in 2 days.  Called my MO he states that its not the chemo ( I like you have not had a nose bleed since I was a child) saw the ent he didnt see anything causing the problem and told me to call them the next time (God forbid there be a next time)  when its active he would be able see what was going.  Both he and the MO did say to stay hydrated and use a humidfier to keep the nostrils from drying out.  I bought some saline spray and have been using that as well as not blowing and treating my nose very gently.  

Sorry you are going through this, Keep me posted if you find any solution

Hugs

    

soriya123

Zimmy, so far I have no tingling on face, fingers or feets(toes) yet. I asked my nurse, some patients would have around 3,4, 5 n 6 cycle. Some patients also have black nails issue....scary. I am on my 3rd TCH today, crossed my fingers. I am not looking for nausea, constipation, loosing appetite and fatique at all.

angelanature

Hi All,so where to begin? I'm happily in my second marriage with a 11yr old stepson who i adore,and have 50/50% of the time. His Mom is very bitter,even though she filled for the divorce,she has no communication with us and ignores emails regarding my diagnosis.We had custody during July and he watched me loose my hair,was there in the hospital room when I got my port,saw me really sick after my first chemo,etc. He handled all of this well,my concern is now he is starting school if he has a fever and my wbcs r in the toilet,yicks! His Mom could care less about my condition the last week of July we had my brother take care of him because I was so sick. What woman has no compassion for another woman going through this? I would be at her doorstep asking how i could help. Am i the crazy one? Angela