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Pills, pills and more pills

Pills, pills and more pills

I've always been the sort of nutcase that has preferred nature's way over conventional drugs - except if my life was at risk of course. Now I have enough pills to open a branch of Boots in France. Pills for mild nausea; pills for medium nausea and pills for projectile vomiting, with the reassuring smile from the pharmacist that I will need all at some time. I've got steroids, anti-inflamatories and pills to stop stomach ulcers (which I'll probably get because of all the pills). There are patches to numb my port on chemo day and paracetamol thrown in for good measure. Today the nurse comes to inject me with something which came from the pharmacy in an ice bag and is languishing in my fridge. It will increase my white blood cells apparently. That I like.

I'm just wondering if the same happens in UK and if I'm missing something that I can ask for. I have drawn up a big calendar chart to get it all straight in my head. I suppose on the plus side, if the steriods make my face a bit puffy then the wrinkles may not look so bad. There's always a positive - and if there isn't then I'll make one up.

Hope everyone is feeling good today. I've got numb fingertips. Day 3 post chemo. Also feel as if I downed half my Jameson. Wish I had.

Kryssy xxx

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I had chemo yesterday and have a similar sweetie collection. I've two strong anti sickness one medium anti sickness stomach protectin and steroids. No white cell booster though. Trying to drink gallons of water but the tastebuds have packed their bags and vacated for the duration.

Good luck with treatment

LA xx

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Hi this was me last week.

Made up for food intake today. 😂

I didn't get anything for blood cells eitha. ?

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Haha! That looks about right!

I only had pills for normal nausea (not all the varieties you have) - they gave me a box after each chemo and in the end I told them to stop because I didn't need them. I was on carbo/docetaxel and only took them for around 3 days each time. I wore acupressure travel sick bands around my wrist for a week after chemo - maybe it was the placebo effect, maybe I was just lucky, but I think they helped. Might be something for you to try if you want to avoid all the pharmaceuticals 😄

The fridge injections are a blessing. Hopefully once the nurse shows you what to do, you'll be able to self-administer. I used to be given a box of 10, plus a sharps bin, and would do them myself. My 5 year old liked to 'help' i.e. watch up close and ask me if it hurt!

Hoping you don't need to use all of your meds if you don't have to, but if you do, chug them down and enjoy the relief they give you!

Vicki x

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Morning Vicki,

I've got those bands somewhere as I'm a dreadful traveller and get sick on a ferry in dock. Don't know about self administering the white blood cell stuff though. I'll ask the nurse when he comes. I think this is just a one off two days after each chemo. We'll see. Don't like the swimmy head, it's making me feel weird. I'll go eat something and see if it helps. Thank you for the advice.

Kryssy x

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Hey Kryssy,

Like the others I remember it well. I also got the shots (neulasta) the day after each chemo, the first one was administered by the district nurse but I did all the others myself, its not too bad as it subcutaneous so in effect I just pinched my tummy ( and there was plenty of it to pinch :)) and injected! Its a small needle and feels just like a little pin prick! I did get some bone ache with the neulasta which I have seen others talk about too but for me it wasn't too bad and only lasted a couple of days after each shot.

As yosh said hopefully you wont have to use all the meds I didn't have to use a lot of them thankfully, I still have them in a box at home!

Best of luck with it all and hopefully the side effects wont be too bad for you!

Dx

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Yes, have still got a cupboard full ! Looks like they are looking after you well . Have you also got something for constipation? I had terrible pain and thought it was a bowel blockage which turned out to be constipation. Got into the routine of taking laxido every cycle to prevent it happening again .

I had the spaced out feeling for the first cycle but then was ok with the others . Used to get headaches when I came off the steroids ( had for 3 days ) . But otherwise apart from tiredness and aches in legs coped well. Keep drinking plenty of water and walking is good for the aches. Remember walking round the bedroom at night when i couldn't sleep !

Helps to keep alittle diary so you can see any patterns . Used to stay close to home the first week but weeks 2 and 3 in the cycle were ok able to visit my daughter in Bristol ( avoiding anyone with colds etc ) and get away to the coast for some sea air .

Sending a big hug and remember to contact your team if you have any issues . Love and best wishes Kim x

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Looks familiar Kryssy. Don't worry it won't last forever...I used to look forward to 'recovery week ' at the end of the cycle and planned outings and even the odd beer before the next onslaught. xx

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Thanks girls. All good advice as usual. The tingling is caused by Peripheral Neuroplasty apparently. Hmmm. What next? Nurse is late and my friend and I are itching to get to the shops but hey ho we'll have to wait. Hope this numbness reverses as I have nerve damage already with MS and Lymes. I'm a walking medical wreck ha ha

Kryssy xx

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If the tingling persists, remember to mention it to your oncologist. Severe peripheral neuropathy can be extremely debilitating. It's usually Taxol that causes it and I ended up having a 20% dose reduction for my final two cycles. Still have some side effects after a year but nothing that stops me from doing anything. Well, apart from being unable to balance properly on one leg in Pilates that is.

Didn't need much in the way of anti-sickness tablets, crystallised ginger helped me twice. Managed to get a lot of housework done while on steroids but and I've been told that I never stopped talking.....

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Hi J. Nothing I can do about the Taxol as it's in there. My GP said I can go anytime in between hospital appointments if I've got any worries. I'm fearful that they'll stop the chemo altogether and I wouldn't want that. I'm supposed to be at art class tomorrow but doubt it's worth going. I'll have to learn to paint by mouth - that'll stop me talking. The steroids stop after today. They were only prescribed while taking the Emend. It seems each doctor/hospital has a different way of doing things. The nurse eventually came and gave me the Neulasta and warned me I may have pains in my bones. It just gets better and better!

Hubby has just rubbed some Diclofenac into my hands and wrists as it's a great pain reliever. Nothing yet but it takes time. I'm at the point of getting out one of my MS (illegal) buns from the freezer and eating that and I don't give a fig if the gendarmes turn up either. Now there's fighting talk.......

Kryssy xx

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nobody will stop chemo until your symptoms are severe or getting worse and even then it wont be stopped but only postponed or reduced.

neuropathy isn't particularly caused by Avastin but it (avastin) hits all weak spots in your body and if you already have a condition it may get worse so keep an eye on it.

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That's a bit reassuring. Thank you. I just hope that some feeling comes back in my hands. They are important to me. xx

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I developed it 2 months after end of chemo but still on Avastin. I had mri on my neck which showed w&t which i didn't know about but which inflamed on Avastin. Cant do anything about it so just waited and it was all gone in few months.

I had same issue with lower back and knees (inflamed tendons now ) but again nothing can be done so it slowly getting better.

I make me smile when women say I'm only 62 (58, 49, 72 or whatever) but feel like 90! Well I'm 38 now and feel like 100 since i was 36 :-) if that make anyone feel better....

Kx

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Thank you K. You are so young - but you will be my age one day, that's a promise! xxx

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Hi Kryssy

Sorry to hear you are in so much pain with your neuropathy. I have heard of people being prescribed Gabapentin for this type of pain. Might be worth asking about this if your symptoms continue.

Good luck

Txx

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I've got a dosset box for all my pills. You'll come off them eventually, out of the ones I take only 5 are due to the cancer.

I was very lucky I didn't get any sickness maybe that was because I took the pills. I take Amitriplyline for the nerve damage.

Good luck with it all and don't drop those pills on the floor or you'll have a fun time trying to sort them all out.

Best wishes, Zena xx

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Hi Zena. I've been reading up on PN and it's not encouraging reading. During this afternoon the pain has increased severely and now my hands and wrists are almost totally numb, tingling and the pain is concentrated in the wrists and making me a bit tearful - and I have a high pain threshold too. I can barely type or hold a cup. I am a painter so the possibility of holding a brush at the moment is zero and I'm in the middle of a commission. It's obviously due to the chemo but I only started on Tuesday and I didn't expect to have all this so soon. I hope to see my GP tomorrow and see if he can help but reading about the Amitriplyline it looks as if it's an antidepressant and I don't want to go down that route. I think my MS is going to be a stumbling block with chemo but if they stop it then what next? I can feel a sleepless night coming on.

Thank you for your advice though. Thankfully I don't feel sick and the wobbliness this morning went after breakfast.

Kryssy xx

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Just seen this, I was unable to open bottles, jars, pots of rouge etc. Made lots of mistakes typing too but it did stop getting any worse after my dose reduction and then started to fade once the treatment finished. Some days I still have very slight tingling in some finger tips but most days I do have numb feet. I'm about to have another course of acupuncture as I may have to have weekly Taxol soon.

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Did your dose reduction affect your treatment? I already suffer with clumsiness, muscle cramps, slurred speech and numbness now and then from the MS. I do stay relatively well with it though, having the attack/remission type. Sometimes I have to have a wheelchair to get about but I always recover. I don't think the onc has taken this into account when working out my treatment. I'll be seeing him just before my second treatment in 3 weeks. Perhaps we can work out a solution and I'll be able to see if by the third week of this treatment whether or not things improve. I do hope so. Thank you January 2016. Sorry, don't know your name. Kryssy xx

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Sorry, I should remember to sign off properly, sometimes I do remember. It's Helen. I don't think I made it clear that the severe pain is only for a few days each cycle (or it was so for me). It's the tingling, numbness, etc which continued throughout. I remember being told initially that I might be unable to do fiddly things, like undo buttons. Instead of listening properly what that might mean, I just brushed it off, thinking so what, most of my stuff's got zips anyway. It's strange how we hear only what we want to hear at times.

It may be that your onc may need to reconsider your pre-existing conditions. You must tell him though. Carbo is the main drug which knocks out your cancer and the Taxol dose is often reduced because of neuropathy. It is sometimes dropped altogether. There are also other taxane drugs that can be used instead of Taxol as I think I read somewhere that it is the substance that the drug is suspended in, that causes this reaction, which of course not everyone suffers from. I also remember reading that the other taxanes are more expensive.

Hope you can start to paint again soon. Do you paint portraits or landscapes? I envy anyone artistic. For info, within six or so weeks of finishing my six cycles, my handwriting became mine again. And my rouge ended up on my cheeks, unlike when hubby had to open the pots for me and always managed to stick his thumb in and then I could follow him around cleaning red blobs from all the furniture......

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Hi Helen. That's a bit of encouraging news then. Hopefully I can get to see the GP tomorrow and perhaps he can give me something to help sooner rather than later. I don't want to lose the use of my hands - which is just about how I am right now. The Diclofenac has eased the sharpness a lot but I don't know whether I'm doing right from wrong using it. Hubby's been sitting rubbing my ankles for the last hour during "Who do you think you are" as they are now screaming at me and my feet are numb. Hopefully it will ease off by itself. I don't mind the pain so long as it is temporary but to end up with more complaints than I started with would be something different. Thank you so much for your advice. Take care yourself too. Kryssy xx

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HI Kryssy, I read that it was an antidepressant and worried about taking it but I was told by the pharmacist that it was once prescribed for that in its early stages but isn't any more. Apparently, the dose is so low it wouldn't have any effect as an antidepressant. Best you check it out with your doctor.

I find mine improves in summer and is much worse in winter. I wear socks a lot and have a lovely thermal pair of gloves. I've been told it can't be cured but I've been told other things that didn't happen.

Good luck. Let me know how you get on.

Zena xx

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I will certainly let you know Zena. I don't want to progress further with it as I know it's almost impossible to reverse. I don't have any arthritis (that one escaped me) so keeping my hands good for painting, gardening, knitting and such like is important to me. At the moment I am typing with just a couple of crooked fingers and the heat coming off of them is incredible. Hubby is just making me a herbal sleep tea and I'm off to my bed and hopefully tomorrow will be a better one. Just so long as some of those nasty bas***ds have died today from the chemo then I'll be happy. I did have grey pee tonight, which was a bit disturbing. Showed hubby and he just said, "Ooooo!" Got to laugh - studying pee and describing poo seems to have become our latest pastime. What did we talk about before cancer I wonder...... :-)

Love to everyone and nightie night.

Kryssy xxx

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Hi fellow chemo. Twin.

I was only sent away with steroids and anti sickness tabs.

And if I need anything else ring dr. Which I did. 😂

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My consultant tells me not to go to my doctor but go straight to them. Nothing seems the same across the board. I wonder sometime if our luck is due to where we live and who we're lucky to see. I'd certainly recommend my surgeon. xxx

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Hi ZenaJ. Just spoke to my GP and he said he doesn't know enough to give me something to stop the PN but just to drink loads of water and take painkillers - which I'm doing. I see the Oncologist two weeks today so will endure until then. I just hope that my hands (and feet) don't get any worse. I'm in agony and can hardly do much with my hands - typing one finger. I'm sure it will improve next week. It's only been since Tuesday when I had my first chemo. My GP said they will not stop the chemo but just adjust it. That's made me feel better. I don't want it to stop. I'm in for the long haul.

Kryssy xxx

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Oh, at least you're a little bit further on Kryssy. Let's hope you can manage for a couple of weeks and that the pain eases up a bit (by a bit I mean a lot). I do find that it's worse some days than others and particularly bad when it's cold.

Best wishes for the next chemo.

Zena xx

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Krysyy and Zenaida, here is a link to some exercises for CIPN, from a cancer institute in the US, Dana Faber. From what I understand, painkillers are ineffective against CIPN. I found heated wheat bags, the type you put in a microwave effective at relieving the pain for a while.

blog.dana-farber.org/insigh...

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Think you could open a mini pharmacy with that lot. But you are like a boy scout ready for all eventualities!, Great to have a sense of humour it helps in all this. I find since Chemo cannot drink Paddy or Jamesons. A glass of wine is enough to knock me out.

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looks about right. problem is after chemo and surgery and full recovery number of pills a day doesn't go down a lot :-)

I don't see many familiar labels but I probably forgotten them by now anyway, but I was on at least 3 different laxatives so make sure you stay regular and take them all

steroids you're given now wont make a lot of difference except to cause constipation. it's steroids you get in high dose after surgery or in complications or allergic reaction that swell you up. it's called moon face...

Kx

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Looks very familiar to me, prior to my illness I barely took a paracetamol. I have steroid anti sickness for 3 days after treatment plus another anti sickness I can take for as long as I need. I also take omeprazole to protect stomach lining, then nothing. At the moment I'm one week before chemo again, so just the omeprazole at the moment. I had the injections this time for 5 days but was unable to do them myself. I'm a bit of a needle phobic. Luckily the district nurse came in and administered each day. Good luck with the rest of your treatment x x

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Same here - rarely took a pill. Think my body is in shock. Hey ho. Keep well. Kryssy x

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Hi Kryssy-

I also had the at home pharmacy. Luckily for me I needed only the lidocane(for port numbing) and motrine and I gave myself the Neupogen shot for white blood cells at home. I had no nausea except for a little bit that a small bit of food would fix. You may find you do not need all of this but good to be prepared in case. I was scared that I would need all this supportive drug help. Take it day by day. Prayers that you need little drug help. Everyone is different on how they react.

hugs, Carol

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Sorrry to hear about your numbness. I had similar feelings in my fingers and toes whilst on carbo/ taxol. My onc stopped the taxol after only two sessions. I was nowhere near as bad as you . Definitely talk to your onc ASAP. Hope you start painting very soon and show us some of your work.

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Haha! Yeah, we get tons of drugs here too. I was told to stop ALL other stuff, even circumin & green tea, 3days before chemo & 3 days after.

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