Oh no Zainab, that’s not good at all, no wonder you’re feeling low about it. All of us just want this part of our lives over as quickly as possible and delays are just soul destroying. Good for you for involving PALS, I hope they are able to help move things along xx
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I don’t think it helps from what I’ve read or been told. I did consider it. I think as long as you say when it causes you problems doing things you should be alright. My feet were really hurting yesterday though and the nurse suggested not going for walks for the last 4 treatments but they recommend walks and I like walking or running normally.
My neuts are 15 and WCC is 21 so I don’t need the injections this week (they were changed to 5 injections as that’s better for weekly treatments).
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I’ve thought about using these but can you use compression on the surgery side? I had a call from the nurse practitioner about potential side effects of paclitaxel the other night and she said if I get neuropathy that lasts for more than a couple of hours after treatment I have to let them know…she said we don’t want to cure you of cancer and send you off with a lifelong condition (felt quite nice to hear the word ‘cure’ to be honest). I’ve had neuropathy in my right hand before due to prolapsed discs in my neck so I’m praying it doesn’t mean I’m prone to it 
The nurse said diarrhoea tends to be the most common side effect, but because I have to use codeine to combat the chest pain she thinks the constipation effect may balance things out 
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I do wonder about what forms the decision for weekly, fortnightly or three weekly treatments. When the nurse called me to discuss the move to paclitaxel she said if the side effects are bad they could move me to weekly treatments but they would prefer to keep them fortnightly. I wonder why? Lots of people seem to have their taxol weekly so I’m not sure why I’m on a fortnightly regime 
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I’ve really not had any discussions on this subject. It’s always been 3 weekly for me. They’ve never given me any options or what ifs. Maybe because i havent had any issues as of yet 
Maybe it depends on if you’ve had lymph nodes removed and are at more risk of lymphodema? I shall ask on the Paxman and see what the American girls are advised.
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Weird as the nurse just said let them know if it get’s worse to me yesterday. I do know people that are still effected by it though from chemo. I think it just goes away usually when you have finished chemo. I was also told by my onc that when he reduced the strength by 10% it would help but it hasn’t made any difference.
I spoke to the original onc I spoke to on Monday re my op and he said a level 1 clearance will be fine halving the risk of Lymphadema so we think that is my best option probably. The standard would be a full clearance but as I’ve responded so well then just level 1 is OK. If it comes back in level 3 that is associated with metastatic disease usually.
Weekly is supposed to get a better response but it’s more work and a hard slog. I’m getting fed up with it now especially as I missed a week. Roll on the 29th. Sometimes they don’t do the missing week’s apparently but I was told they would in my case.
I’ve been reading about this too. There have been some studies showing benefit of cold and compression, and I think I read some which said compression was as effective as cold. I’m planning to wear knee high compression stockings for my Docetaxel but wasn’t going to bother about the hands. I mentioned it to the oncologist and they didn’t seem particularly interested but the studies I found seemed legit and I don’t see it doing any harm. I’ve had all the axillary nodes removed on one side so I don’t think compression gloves would be advisable for me.
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@luckyduck1 i get it, I’m not a good patient either. I’m normally one just to deal with things myself rather than go to GP or hospital.
Take care 
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Hi all, looking in from the October starters to gather a few tips from those a bit further on than me.
Commiserations on the liver level front to those suffering - I’m in the same boat and just about got through paclitaxel 3. I’ll be surprised if they let me do next week if it climbs again but fingers crossed! I have 12 pac to do in total followed by 4x ec
@luckyduck1 I love your twistie! Can you share where you got it from? It’s epic!
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Excellent! Thanks.
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Yes I have been using cold gloves and foot things from suzzipad during my chemo (my final round of Nab-paclitaxel is planned for the 19th). Seems to be working for me.
I also then wear compression calf sleeves on my legs straight after chemo and for 48 hours after on and off (not continuously but wear them when I’m just sat around and to sleep in).
I can’t wear any arm compression as I’ve had ANC on one side and PICC on the other so it’s not recommended (I did for the first round they think it’s what caused my blood clot on my PICC).
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If you’ve had lymph node clearance no compression on that arm, and same for PICC arm. It’s fine on legs tho & from my experience I really recommend a couple pairs of compression calf sleeves, even if you don’t wear them during chemo you’ll get benefit from the days after
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Definitely agree there is both a difference in different trust but also a sort of paint-by-numbers approach to what we all get. My hospital where I have chemo has on its website a list of “SACT Breast Cancer Protocols” (Systemic anti cancer therapy) where it lists all the chemo drugs and the rationale for prescribing them for breast cancer patients, frequency etc. I happened upon this myself but find it really interesting (would love that my oncologist makes me privy to such info but alas I have to find it myself). It might give you some reassurance to see if you can search that for your hospital?
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I’m writing this from A&E…I’ve had some cold symptoms - cough, sore throat for a while. But yesterday evening I started having fever around 38oC. Called Macmillan number and they advised me to go to A&E. Im still in A&E - no beds…but they found a private area with a toilet just for myself - so I’m feeling safe and comfortable. I’ve been monitored - given IV antibiotics. My neutrophils are very low. So if you have fever +37.5, and you are having chemo, please call the helpline
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I’m really sorry to hear that @guida, I hope that they let you out quickly. I’ve had enough of visits to A&E recently. They are so stretched and it’s not a nice place to be.
I knew that my slight raised temperature was just part of a normal cold, if it had stayed that way for any amount of time I
Promise I would have called my team. Sometimes you have to trust your gut instinct with these things. I’d already spoken to my nurse earlier in the day to confirm that I should cancel my flu jab and she had advised me.
I’m an absolute snot fest at the moment and hoping that it all settles in time for my first Docetaxel on Monday. I’m already prepared for this round to be horrible as I’m having Zolendronic acid infusion alongside too and I’ll be dealing with the tail end of this on top! I had blood test yesterday so that will determine what my levels are I guess. I’ve not heard from them so I can only assume that they are ok.
I hope you get home soon, rest up and stay well. X
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Sorry to hear this @Guida - take care of yourself. Good to hear a (semi) positive experience of A&E xx
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Guida sorry to hear your in A&E stress that you might need antibiotics within the hour as your rapid response card says if you were given one 
you really need to make a song and dance and not just wait to be seen, even if it’s out your comfort zone to make a fuss, you must 
Shi xx
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