help with T

[NetteW]

Bumblebee,
did you get your second dose of t last week or are you in this week. I get bloods on Monday and dose on Tuesday. Just keep thinking only 6 more weeks. I have anti diarrhoea tablets and thrush tablets to start this time so hopefully se will be better.

I have found water with sliced lemon, Apple cider vinegar, chicken noodle soup, chewing gum and keeping ways from all flour, pastry, dough, mushrooms, yeast, marmite, sugar and fruit helps with thrush and later metal mouth.

I am also trying slippery elm food from H&B it is a supplement and bed time drink. Slippery elm is used to help digestive tract. It is worth googleing for details. I is very bland but not nasty.

Whiskers just noticed you are gargling with colgate I get a mouth rinse/gargle and a mouth wash each cycle from the unit, have you asked, I am not sure if they are alcohol free.

It is 3 am and I have post Indian heart burn and have been awake an hour I am going to get a mug of slippery elm cos it said it helped with heartburn and I need my sleep to get through the next two days without complete meltdown. X

[NetteW]

Hi bumblebee/annette
Are you on another thread. I am on the July Junkies.
Hope you are ok
Nette x

[NetteW]

Hi Bumblebee,
I am under  name removed, who is based at Castle Hill. I haven't got a start date for radio except I have been told it will be wk 3 or 4 post last chemo on 22.10. That would put it 2nd 3 rd wk of Nov at a guess. Scarborough is a bit like a cottage hosp but it does mean we don't have big teams. Dr  is here most Mondays and I have seen him by just turning up on the day. Well I was called in. I did't just walk in. We get offer transport to Castle Hill but it means a longer wait so my hubby will drive me although I have had a couple of offers from friends. If I go with hubby I will be able to sleep in the car but if a friends takes me I will have to be sociable.

I am not looking forward to T next Tuesday as still really tired. An hour's activity and I need a nap. Hope I improve as the week goes on I don't want this as my starting point.

I have now got rid of my thrush but think I will now be now on the tablets until the end of the treatment. The taste of mouldy cotton wool caused by the thrush is now cleared but I now have metal mouth. I am drinking lemon water and apple cider vinegar but nothing has worked so far. Think I should be using more mouthwash and rinise but just too tired to keep running up and down the stairs.

Bit down today for some reason. Maybe just that it is a week away from next dose. Maybe I need an early night. Nx

[bumblebee63]

Hi NetteW,
feel funny typing your name as want to put Annette which is my name !!
Yes  i have used the bleep 500 a few times, they do get back to you pretty quick if no first answer. I think my radiotherapy will be starting end novemberish...or december. Not looking forward to travelling  to hosp for 15 days tho, im too weak still to drive myself so transport is bit of issue. 2nd session of T next week which i am now dreading after the first one as still feel like death. Who is your oncologist? I am under Dr , but never actually see her, just one of her team. I did see her when i was an inpatient at castle hill for my first chemo thats all.
Take care in the meantime. xx

[NetteW]

Hi Bumblebee,
I am just up the road in Scarborough. My oncologist is based at Castlehill.
I will have my radiotherapy at Castlehill. It will take us an hour to get there but I have heard it is amazing. At weekend I am on bleeb 500.
X

[bumblebee63]

hi Nettew, yes all my treatment including surgery, chemo and raditheraypy is at castle hill which is lovely and only about 35-40mins away. Was an inpatient in july on cancer ward and it is like a hotel! x Are you in the area too??

[whiskers2013]

Yes I have pretty much worked through it, I'm 37 and a single mom to the most wonderful boy I am putting through college at the mo. It's hard but work have been amazing and it gives me that bit of normality.  

T for me has been tough for around the 5 days were I have been bed ridden but as I have said before the recovery in comparison has been so much quicker. Do be prepared for the odd heavy leg episode as that has caught me off guard now and again but is manageable,  just make sure you give yourself the odd break and it is totally doable. 

I am now ready to kick the crap out of round 2, we can do this 😄

[NetteW]

Hi bumblebee, just give yourself a couple more days and you should be on the up.
If you are in East Yorks will you getting your radiotherapy at Castlehill?

Whiskers, back at work you are so good. I find I can do an hour then want to sit down.
One of the things I feel so lucky about is that throughout is that I had just retired when the C hit. My children are grown up with families of there own and after 8 years babysitting the children are all at school. I was a child bride you understand.

Next year we are going to start visiting all the places on the wish list and then some.

Hang in there Bumblebee tomorrow will be better.x

[bumblebee63]

hi... well the sun was shining here in east yorkshire but ive still spent all dayon the settee feeling like death warmed up lol!!  Still hurt all over but at least my tummy has settled down the last few days. Burning feeling all over body even soles of feet Hey ho, i will definitaly ask if dose can be adjusted next session! By the way, i am triple negative so no drug follow up for me, any others out there??

[NetteW]

Hi bumblebee, hang in there. You should start to feel a little better tomorrow and by day 10 normality should be almost there. Recovery seems very fast round day 9 /10. They have reduced my next dose by 25% so I hope they do the same for you. I have also lost over a stone since chemo started. Bonus hey. Sleep tight and here's to tomorrow. The sun will shine. Xx

[bumblebee63]

Nette and Whiskers,  day 8 of my first T or doxatel whatever we want to call it. As previously posted, i have had horrendous diarohea, lost well over half a stone in a few days! And yes every part of my body hurts and burns, trying to drink more etc as per instructions from onc unit, but its all such an effort t o even move off the settee!! So wobbly and weak! I hope they maybe reduce the 2nd dose, dont think i can face 2 more sessions of this!  I had no effects on fec apart from the oral thrush.  Joy oh joy hey folks!

[NetteW]

Hi Everyone, thank you so much for all the suggestions. Now I am feeling a bit better I will add my findings to all yours.
If you have oral thrush.
Avoid sugar, yeast and all fungI. That is bread, all dough products and mushrooms. I have brought milk teeth brushes and brush before and after meals plus in between.
Chicken noodle soup, (chicken bovril, water and vermacillie, sorry about spelling, cook ver... then cool to tepid) pineapple, ice cream, water ices, jelly.
All the meds you can get you hands on.
Oh yes internet search said cider vinegar I only got some yesterday so can't vouch for that.
Hope this with the replies sent help anyone else.
Again thanks. I still have mucky mouth but no it is getting better. Xx

[poemsgalore]

I've heard that pineapple chunks or pineapple juice works a treat for the yukky mouth.

[Mindy63]

I found drinking warm soup in a mug gave me a little relief from horrible tongue stuff.

[netball]

Hi Nette I found that drinking cold stuff through a straw worked as you didn't get the horrible taste in your mouth.  I normally drink loads of water but really struggled throughout chemo but it improved in time. Ice poles are good too.

Whiskers my T was the worst time ever.  I thought rigamortice  (not sure of spelling) had set in!! I t was so painful from my ear lobes to the soles of my feet.  My onc reduced my dose by 20 mls and that was so much better, still painful but not as bad.  I too was worried that by reducing my dose my chances of survival  would be lower but onc said that it would be ok. I refused to let them lower it again for No. 3 as I did not want to be worried about getting cancer again so they agreed to keep it the same.  They were only going to reduce it by 5mls but I did not want to take the chance.

I have finished my chemo and rads now and am on Tamoxifen.

Good luck with the rest of your treatment

[NetteW]

Hi Marie, oncoligist has reduced dose for next cycle. Runs seem to have stopped with meds and Whiskers has given me some drinks ideas. I lost a lot of weight from servere nausea during first cycle of fec that i never fully regained so maybe this time i will have that as a bonus as well. Have 3 st to loose eventually but not stressing about it now.

Whiskers, I think you can get additional steroids for the bonemarrow pain. Gives good relief only se is you you have to reduce dose slowly, but if you bone pain is an escalation of mine who cares. This is from the person who tries to eat nothing processed or with chemicals in it and am very wary of tabs. Now adays it is which tab and when. Hay ho we should be done for Christmas with little bits of hair regrowth.

[NetteW]

Hi Whiskers, my logic says that they are trying to kill fast growing cells, the visual proof that it is working is how low our neuts get so if you went neutropenic then the chemo is working. My sister claimed they treated you to as close to killing you as possible then built you back up. By that reckoning your chemo is working on the reduced dose. I am sure the same will hold for the rest of the treatment. Have you thought to ask the nurse on the forum site. I have found throughout knowledge it power all
You have to find is the right question. I ALWAYS go with a typed list in triplicate. Good luck. Have slept better but still awake at 3 am

[whiskers2013]

Oh and I also have 3 weeks of radiotherapy to follow and 5 years of tamoxifen 😞

[whiskers2013]

Hi Nette, my worry with reducing the T is that they reduced the Fec from dose 2 as I became Neutropenic after my first dose. Half of me thinks man up and the other half lets out a little wimper at the thought of it. I have a meeting with my doctor next week so going to discuss it with her and see what her thoughts are.

Drink wise I found thick chocolate milkshake to hit the spot believe it or not. Also sweet coffee if you can stomach it. Ialso reguarly gargle colgate cool mint alcohol free mouthwash which is also aantibacterial.  It gives me about an hours break from the nasty aftertaste and I also have had 0 mouth ulcers from the start.

How are you going with se's at the mo, any let up?

[NetteW]

Hi Wiskers2013, according to my unit they only used to give FEC and keep docetaxol back in case you got another cancer. But they found that giving the two at the same treatment reduced the return cases. However my way of thinking is that it gives them some leverage on dosage. In fact I have a neighbour who was told 3 cycles was optiman but. one or two fine. She had 2 in the end. I had my does reduced today by 25% and can only rejoice. We don't have to be martyrs for this to work. Most will like me still be facing radiotherapy. I was told at the start that exercise increase the effectiveness of the chemo. So my regime has been good food loads of veg, peppers, carrots, spinach and watercress. Anything that is bright coloured. Mushrooms and garlic help grow White blood neuts, and so far at least on week 3 I have been walking.


So far T and possible thrush have altered my taste buds. Not found a way round this but at the moment all food and drink tastes HORRID. I think we are all different but some ideas. to help with fluids. Would help.

Those going into T this week don't fret the infusion was easier than FEC. Take everything they give you and tell them if you have a problem. I got caught over the weekend as we only have a phoneline to call at weekend which is 1.30 hr away.

[whiskers2013]

I'm on day 8 of Docetaxal I and really didn't want to post anything as didn't want to scare the other ladies but feck me I have never been in so much pain in my life and I consider myself pretty hardcore. I have been pretty much bed ridden since day 2 with a trip to the hospital over the weekend.  I feel like I have crushed every bone in my body and no signs of it letting up 😞 really didn't want to reduce my dose but starting to think I may have to to get through the last 2 😞 even the bones in my poor face hurt 😞

[Mindy63]

Taxotere is tough but once you know what to expect it gets more bearable. Hopefully you can get medication to stop the runs.

If you are feeling weak all the time they may even reduce your dosage.

[NetteW]

Thanks Rattles,
Yes it is docetaxol. Called into unit and not sorted but better. Need to drink more but thrush makes mouth taste like it is full of old cotton wool. Off to brush teeth again and gargle.

[Rattles]

Hi NetteW,

I am sorry to hear you are having a tough time of it- is the T docetaxol? Whatever it is, you should not be suffering so badly. I have had taxol and doecetaxol and got diarhea with the docetaxol. You can be presecribed a medication which is essentially immodium (can't remember its proper name) though check with your treating team first. It makes a huge difference. Don't suffer in silence as you will get run down.

Good luck Rattles

[NetteW]

Just back from the unit. Had blood taken given diarrhea tablets and a saline drip. Feel better and glory of all oncologist has reduced T by 25% for next cycle.
Feeling more positive.

[NetteW]

Hi All this is my first post.
I started FEC on 1st July so hope I have hit the right place.
Last Tuesday I had my first dose of T, I seemed to tolerate it better than FEC with less wooziness. On Friday I got the evening diarrhea, about 7 episodes and eventually surfaced as weak as a new born kitten.
Saturday got up at 4 to air the bed. Had to have help getting down the stairs. I walked 7 miles last Monday.
Trotts started again as evening approached. Back to bed so weak.
Last night had more of the same. Still in bed waiting for unit to call back.
Is anyone on second dose. Very down and tired. Thrush is back but have the meds. Not kicking in yet.
Sorry normally pint half full not at the moment. Been at this with DCIS full mastectomy and reconstruction since March 2012. Just bad luck but so tiring when down.