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May 2017 chemo starters

katie11
Member

Re: May 2017 chemo starters

Oh ladies not a good day again!

Anniea must be very frustrating. Waiting is one of the worst parts of our journey. Hope they get it sorted ASAP! I know I had to wait 4 weeks for my surgery results it drove me crazy!

WolfEE oh my god. Good job you were on the ball. Goodness knows what would have happened. Makes you remember how vulnerable we all are. Just wish I didn't have to have a picc line! You definitely deserve bravery award today.

Well done on your diploma MJK .

Good luck today Heather. Any others on treatment ladies? I've got a long day too steriods had me wide awake from 3 and have a surgery feedback appointment with breast nurse.

Hope you are feeling better treehouse, could be you may pick up after blood transfusion xx
Mai7
Community Champion

Re: May 2017 chemo starters

WolfEE, Raitchr, when I go for chemo they always get me to put my hand in a bucket of very warm water for about 5mins and this plumps the veins up like a body builder. If they don't do that at yours, you might want to suggest it....

Mai7
Community Champion

Re: May 2017 chemo starters

Oh dear, not a good evening ladies. We all seem to be struggling in one way or another lately.

 

WolfEE, that's terrible and thank goodness you brought forward your appointment. Sending you a big hug and hope the blood thinning medication goes well. 

 

Raitchr, likewise, I'll take any amount of stabbing to get a vein and did last time after three nurses! The first one was very much lacking confidence in setting up cannulas and even said so. After 2 bodged attempts she called another nurse over who set it up easily, the original nurse then started to administer the chemo then aborted mission after one minute as she was worried there was leakage so a third nurse set it up in my other hand and she came back again to deliver the chemo. I do not want to see that nurse again. (I wonder if she was a locum nurse and moves around and is the same one you saw?) I ended up in the hand unit having a skin flush as a precautionary.

 

AnnieA, it really is annoying how they keep you waiting for scan results. When I had a CT scan, I was told there was an abnormality on my liver initially but couldn't get anyone to tell me what the problem was for nearly a week. They have to wait for all the right people to have a look at the results so chances are yours has to be seen by a consultant who is on holiday or busy etc. I rang so many times and ended up speaking to the registrar who chased it up for me in the end and gave results by phone. It may be worth making a bit of a nuisance of yourself but be upset rather than angry (because you actually are, right? and they should feel your pain)

 

 

treehouse
Member

Re: May 2017 chemo starters

Wolfee gets the bravery award ๐Ÿฅ‡ . Well done for calling early and getting it checked. We as cancer patients are at increased risk of clots. The blood thinners will do the job and should not affect Chemo x x ๐Ÿค—
A week before treatment started I went to GP with chest pains and bleeding bum. I thought it was anxiety and piles but my paranoia pushed me to Check it hadn't spread to be colon and lung cancer.....every twinge or bump terrified me as I stopped trusting my body. He agreed that it was piles but went super efficient about the chest pains sent me for blood tests and X-rays there and then. Explained the risk of clots being greater. He was fantastic and luckily it was clear.
Raitchr
Member

Re: May 2017 chemo starters

Morning all! Was wide awake at 4,30 am thanks to 8 steroids yesterday. Going to be a long day, chemo 1pm.

 

Hope everyone is feeling better today and all bottoms are responding to treatment. 

 

Heather x

Raitchr
Member

Re: May 2017 chemo starters

I am so against having a picc line because of clots. I will tolerate any amount of stabbing in the hand. Last time was bad as nurse didn't position it right, stuck it in a nerve or bone of little finger, pain was horrendous. I screamed and cried and told her I could not tolerate it. She removed it and walked off in a huff and got a nice nurse to come and reposition. She did it first time and was pain free. I am going to ask tomorrow If the nice nurse can canulate me prior to being called through for chemo.

 

Someone suggested wearing a  wooly glove on chemo hand before appmt to get veins warm, may also try that tomorrow. Chemo nurse use wheat bag and its been in microwave and too hot for my skin.

 

H

Rosie65
Member

Re: May 2017 chemo starters

Oh WolfEE thank goodness you went today, it was obviously meant to be found. As you say you can't dwell on what might have been.

 

Can you have a portacath fitted? I know NHS don't like fitting them because they're expensive but I think you deserve one. My friend who had bc and was treated privately had one fitted from the start.

Raitchr
Member

Re: May 2017 chemo starters

Mai7, I have 3 days of Emend and started steroids today which is anti sickness too. Info said nausea is reduced or less so playing it by ear. I still have Ondansetron and Metoclopramide to fall back on or the stronger ones Info gave me last time but I didn't use. If I had to choose I will take bone pain, however bad, over nausea. Also I will see what is in goodie bag and be guided by nurse. However I did loose 3 lbs with nausea disaster line was happy, good job we are weighed before each chemo, I am Mrs see saw with weight at more, blaming steroids and comfort eating when well. Still weigh less than before op and I know my boob didn't weigh 9lbs! 

WolfEE
Member

Re: May 2017 chemo starters

Hi gang xxx

Picc line taken out today as emergency. I have a blood clot

Daily blood thinning injections for about 10 months or longer!!!! So glad I called and brought my picc line flush and clean forward it was supposed 2 be Friday but I called them this morning asking if I could coke early because it was positioned badly by A&E at the weekend while they were treating me for the insect bite.

While having it cleaned I told the nurse that my hand felt a lot better but I still had pain in my arm pit she said I'll get the doctor to come and have a word with you. He felt under my arm and said he couldn't feel anything (a&e had told me that the pain would be swollen lympth nodes from insect bite infection) he also looked at my blood results from the weekend and said they didn't even show an infection so he sent me for a scan. The scan showed the blood clot. Within 20 mins of the scan the picc line was being taken out. If I had waited until Friday the horrible reality is that I maynot have been here (scary) but..... I am so can't dwell on that.

Now in a panic because my next chemo will be back in the hand that they had previously told me wasn't coping hence the picc line. The other option is a Hickman line but again can put at risk of blood clot and I don't want 2 take the risk.
treehouse
Member

Re: May 2017 chemo starters

Oh Annie that sucks. They should have told you so you didn't waste your time and emotional energy. You are allowed to be pi**ed off about that. Have a rant. Then call a breast care nurse tomorrow for advice. Big hug x
AnnieA
Member

Re: May 2017 chemo starters

Ladies I'm having a wobble ๐Ÿ˜ž
I had an MRI scan last week as I'm halfway through threatment so the surgeon wanted to see how the tumour is reacting to chemo. I've psyched myself up for the last 9 days to deal with whatever the results may be. I got to my 1 o'clock appointment and wasn't seen until 2:10 just to be told my results arnt back.
I'm having chemo before surgery so this was my way of getting some answers as to whether or not the chemo is working. I use up all my energy staying positive and this has just set me back. I feel like there just no end to the disappointment. And if I hear 'just stay positive' again I will lose the plot
Mai7
Community Champion

Re: May 2017 chemo starters

Well, I've just been for a nice walk out and feel better for it and I've booked tomorrow and Friday off work so hope I don't end up in hospital again on my annual leave!

 

Annej, well done, stay positive and bring on the rads. You can do this. ๐Ÿ’ช๐Ÿผ

 

MJK, well done on completing your diploma through all of this. ๐Ÿค˜๐Ÿผ

 

Raitchr, are you planning on taking any anti-sickness pills after Docetaxol? The nurse told me it isn't a pukey drug but can cause depression. 

 

Treehouse & Katie, sending hugs to you marshmallows. ๐Ÿ’—

Rosie65
Member

Re: May 2017 chemo starters

Katie - I had the same amount last week but the nurse did say they would stop them completely over the next few weeks so maybe they are going to reduce them each week.  I'll still have another 10 weeks after tomorrow.

 

PICC line was mentioned for me too,  I'm not keen but like you not sure if my veins will stand up to it. They're fine at the moment. Just Paclitaxel tomorrow no carboplatin so hopefully red blood cells have improved, I had blood test on Monday and haven't heard anything so I'll just turn up tomorrow and hope for the best

 

treehouse - I think you'll feel amazing after the transfusion, there's nothing worse than feeling so drained and breathless.

 

I'm still having 5 injections as well so that's keeping the wbc up and fortunately I don't seem to have any se from them

 

MJK - well done on your diploma, that's some achievement when going through all this at the same time.

treehouse
Member

Re: May 2017 chemo starters

Katie the cancer ads get me too.
I have just yelled at my boys for bickering and not doing as they are told. Husband is out and my folks have just gone home so they are getting me at my weakest. So cross I have confiscated phones and gone to calm down. Can't deal with stupid arguments when I feel so rough ๐Ÿ˜ช
katie11
Member

Re: May 2017 chemo starters

Thanks trisha x

Dam you steriods, you are turning me into a marshmellow again! Now crying at cancer research advert! Only had half dose this week so will hopefully sleep better. Won't have anymore now either as weekly. Are you steriods being reduced on weeklys too rosie x
Trisha69
Member

Re: May 2017 chemo starters

The PICC man put a local aneasthetic in and didnt feel a thing.  He also gave me a plasic cover for when u shower or bathe. DIdnt take long and was very relaxed and calm.  You then have to get an x ray make sure the wire is in right place.  Ive hardly noticed its there.  I know some ladies have it nearer to the elbow mine is higher up and its fine.

treehouse
Member

Re: May 2017 chemo starters

Wow it has hit me fast this time. I normally get to day 3 before noticing side effects. Day 2 and I am knackered. And tummy is wiggly. I blame cumulative effect and low bloods. Actually looking forward to transfusion. Feel like I will be reset to begin again. Kind of wipe out the damage done and reboot. Fingers crossed ๐Ÿคž
katie11
Member

Re: May 2017 chemo starters

Can you feel it trisha? Does it limit any daily activities? I don't really like things like that or needles so feel uncomfortable about it, but know it will be for the best. Feel like I am tense when having any needles put it at the minute which probably isn't helping x
Trisha69
Member

Re: May 2017 chemo starters

Im so glad had the PICC  line.  I am constantly bumping into things and my bruises are massive!  So at least with a PICC  no bruised veins x

katie11
Member

Re: May 2017 chemo starters

Well done anniej, you have done amazing even with all the side effects you have gone through. Must be a wonderful feeling to finish, just think a couple more days and you can feel human again and start the next step. Keep in touch. You can give us some handy hints for rads xx

Hope sports day went well Heather x

Love the bum toothpaste comment treehouse, make me chuckle xx sorry to hear you have all struggle with this se. I haven't been too bad so far touch wood. I really help drinking 2 litres of water a day helps with the consitpation.

So 2nd weekly paciltaxol done today! 7 to go. So far feel ok, bloods doing well only problem is my veins seem to have had enough. Quite sore and they are struggling to find one to use. They have recommended a picc line. Not sure but think it's what I need to get to the end. So, time for big girl pants! Eeekkk! ! Any tips / advice ladies xx
Raitchr
Member

Re: May 2017 chemo starters

Hoping everyone's bottoms are feeling a bit better, I have stocked up on Sudacrem this morning, my medicine cupboard is stocked for all eventualities. Looking forward to seeing what is in my hospital goody bag tomorrow, have requested a restock of everything just in case, seeing as everything can be used post chemo - mouth wash, sleeping tablets, constipation meds.

 

Hx

Anniej
Community Champion

Re: May 2017 chemo starters

Mishy, thanks for asking. Last EC done and dusted Friday gone. Not great this time, to be honest and taken until today to get washed and dressed. BUT, it's over. Isn't that just the best sentence ever? Fingers crossed four has been enough. Consultant seemed to think so, but I do worry. I don't think I could do this again given all the hospital admissions I've had. The Hickman line is coming out Friday ,then meeting the consultant re rads next week. Hope you're doing ok? I look out for you at clinic. Stay well. X

misyangel
Member

Re: May 2017 chemo starters

Thanks Treehouse, they said the second round will be a lot quicker like you say it is seeing if you have a reaction.    Geez 6 for you that is a lot :0(

 

MJK
Member

Re: May 2017 chemo starters

Enjoy sports day Heather. I think we're all feeling like we're doing a marathon with hurdles at the moment. I've just completed my diploma which has been a marathon in itself. I was determined not to let the cancer beat me on that one. Mai sorry you're having such a pain in the butt. No more kicking references! ๐Ÿ˜ฃ
Mai7
Community Champion

Re: May 2017 chemo starters

Raitchr, Glad you are good to go ahead tomorrow. Wishing all the best and in the meantime, hope you enjoy your Son's sports day.

 

Thanks WolfEE, the germaloids contains lidocaine but only 0.7% but maybe I should be applying it 20mins before as well as after! 

 

Treehouse, Im not sure if our TMI is becoming a dire pit of despair or cringe comedy - maybe a bit of both! ๐Ÿ‘น๐Ÿ๐Ÿ’ฉ

WolfEE
Member

Re: May 2017 chemo starters

Mai7, I'm really feeling for you. I've had some major discomfort and pain with my bum and it really hasn't been nice. My problem turned out to be a fissure but there isn't enough time between treatments (constipation) for it to heel so is ongoing.

Not sure if it will help you but I have on prescription from my GP the movicol type drinks but also a numbing cream it's called Lidocaine 5% Ointment. Basically you apply in that area 20 mins before you think you may need to go and it numbs the area. I can't say it works amazingly mostly becaue with all the laxatives etc I don't always have 20 minute warning but it has helped enough to make unbarbly bad slightly more tolerable bad!!!

So far any complaint and discussion I've had with oncologist or chemo nurses have never given me anything accept for the steroids and anti sickness tablets. Everything else I've had to visit my GP
Raitchr
Member

Re: May 2017 chemo starters

Bloods are back, liver function is slightly elevated but told to go ahead and take steroids today ready for T tomorrow. Docs still has to authorise chemo but nurse seemed to think ok. The system does work when they try their computers. Off to sports day for my eldest son, can relax and put my feet up for a bit although a bit chilly today!

 

Heather

treehouse
Member

Re: May 2017 chemo starters

Mai I know this is not something you discuss normally but here anything goes. My GP said that there is another Anusol with steroids if the over the counter didn't work but I think it is prescription only. Give them a ring and ask if it is really getting you down. Love ๐Ÿ˜ the bum ble bee ๐Ÿ
Mai7
Community Champion

Re: May 2017 chemo starters

Thanks Raitchr, it's just sore from going too much plus a hemearroid has popped out. I'll try the sudocreme and see if that helps a bit. It just makes you feel so bad when your Botty is sore. So wish we didn't have to discuss such basic things but we're all having the same or similar problems. I hope it clears up before my next treatment otherwise it could become more of a cumulative problem. 

treehouse
Member

Re: May 2017 chemo starters

Hi missyangel sounds like you are now going on to half of my regime. I get 6 cycles of docetaxel, herceptin perjeta and carboplatin. The first one is always the longest as they pump it slow and give plenty of saline and watch you for reactions. I get all 4 drugs on the same day ( long day) fingers crossed they can sort that for you in future. Most of my 'different 'side effects have been due to the carboplatin (low red blood cells)and perjeta(acne). Good luck you can do it ๐Ÿ’ช๐Ÿป๐Ÿ‘
treehouse
Member

Re: May 2017 chemo starters

Good luck with T day tomorrow heather I hope they pump it slowly and you feel ok. Day 2 round 4 for me and I slept well. Going to take it easy today. Love to all x
Raitchr
Member

Re: May 2017 chemo starters

Re bottom issues, is it a case of struggling to go or just red and sore from going too much? If it was me and it was red and sore I would try nappy cream like Sudocrem as it soothes and covers sores without washing off easily.

 

Manuka may work but as you say it would be a bit messy!

Raitchr
Member

Re: May 2017 chemo starters

My hospitals are in the same trust (Nottingham Sherwood) just on different sites. I have asked at GP but they are different  Trust (Lincolnshire) but said it would be longer for blood test results to come back and difficult to get appointment as small surgery.  I see Onco and Breast Consultant at Kings Mill and just have Chemo at Nottm City as Kings Mill only do chemo 3 days a week and I have tried to swap but no appointments available. Basically Kings Mills is a great newish hospital but no staff for chemo, City send staff over there for 3 days to do chemo. It is frustrating. I am ringing at 9am today as I have 2 x 4 lots of steroids to take today prior to T tomorrow.

Mai7
Community Champion

Re: May 2017 chemo starters

Raitchr, have you tried getting your bloods done at your GPs? I get mine done the day before my oncology appointment and the results are always processed on time. The situation back and forth between two trusts doesn't sound good.

Mai7
Community Champion

Re: May 2017 chemo starters

Treehouse, I'm using anusol suppositories and germaloids gel as the germaloids also has analgesic. I was previosly using anusol cream. I wonder if the manuka 20+ honey will work - you can put it on cuts/wounds/bites etc. but I'd prefer it to not come to a sticky ending!  Now I'm thinking of bum-blebees! ๐Ÿ  I'm day 14 so hopefully it will start to get better as my neutrophils recover. Sorry to hear you have to have the blood transfusion. I hope it goes ok. โฃ

treehouse
Member

Re: May 2017 chemo starters

Mai have you tried Anusol? Takes a few days of regular use but I find it better than germs loads. And eat for toothpaste poo ๐Ÿ’ฉWhole grain cereal does it for me.
Bloods were good enough for round 4 today but still need a blood transfusion on sat at8:00 in order for me to get through to the end. Red blood cells not recovering quickly enough but neutrophils and platelets have bounced back. โœŒ๏ธ
Mai7
Community Champion

Re: May 2017 chemo starters

I need to book into a look good feel good session for the bum hole, I'm in constant pain with it. I've tried germaloids, ibuprofen gel etc. ๐Ÿ‘น MJK, can you not talk about kicking butt, it's making me wince! ๐Ÿ˜ต๐Ÿ˜‚ I was just sitting in the car whilst my partner shopped and as we're all half way it made me think of the Bon jovi song "living on a prayer" 

 

treehouse, hope your blood test turns out ok. Is it definite that you need transfusion or dependent on outcome of this emergency blood test?

 

Trisha, 4.5 woohoo! Hope your treatment goes well

curlyh
Member

Re: May 2017 chemo starters

Hi All...I am on 7th day after 3rd fec and totally agree worst yet...have been wiped out ...gradually getting appetite back but still low on energy...achey all over especially on mastectomy side...had trouble with cannula again so think getting Picc line for last 3 T...so that is next worry...have been couch potato all day...feel so lazy!!!

MJK
Member

Re: May 2017 chemo starters

How frustrating Heather, like Treehouse I have found the NHS professionals to be fantastic but the admin to be downright unhelpful (it took a month to get an appointment when I reported my lump ๐Ÿ˜ฎ). Call up tomorrow and kick butt, if you need to ask for the manager. FEC was the roughest yet but ok now. I'm watching Wimbledon too although I'm not sure watching Nadal or Konta counts as relaxing. ๐ŸŽพ
treehouse
Member

Re: May 2017 chemo starters

Oh Heather not good. Most of my NHS experiences have been hugely positive . The only negatives have been with desk bods who think we are time wasters. I had a minor strop with GP receptionist on Friday afternoon when I needed an urgent repeat blood test on Monday morning. She said no try Tuesday. At this point I got a little stressed saying I had Chemo Tuesday and it HAD to be Monday. She suddenly had nurse practitioners appointment at 9. Then put the phone down without taking my name. I called her back 10 min later and she sounded a lot more apologetic grr.

Round 4 done 2 to go๐Ÿ˜ƒIt would feel great if I wasn't so knackered.

Great news about look good session I have one next Thursday looking forward to it.
Raitchr
Member

Re: May 2017 chemo starters

So NHS working at its best today (sarcasm). Blood test at Kings Mill, chemo at Nottm City. I just phoned City for 2nd time to check results. The person that answered the phone said Kings Mills was not part of their Trust and she couldn't give me my blood results. I will have to ring myself to find out. So I ask for the number and she doesn't know. This contradicts what has gone on for the last 3 chemos. Clearly she couldn't be bothered to log on to the computer to find out as it was 5pm and going home time. Slightly frustrated today after a 2 hour round trip in the rain to have a blood test. The end of this journey cannot come soon enough!

misyangel
Member

Re: May 2017 chemo starters

Hi all, been on the look good feel better workshop today and it  was really good.  The goody bag was amazing and it was full of Lancome, DG, Clinique, No 7 all full sizes and a bottle of perfume.  If you havnt already booked on then get yourselves booked on.  It was lovely to chat to other people in the same boat and swap tips.  One lady mentioned  Boots Pharmaceuticals Aqueous Cream B.P - 500ml 3.49  to use prior to radation she said it prepres t...

 

Then went for review ready for next Chemo on Friday which is the final fec and he said when I start the Docetaxel that this will be administred over two days as they will be putting the herceptin in so on the Monday I will be there for 5 hours then 2 hours on the Tuesday.  He also said I will have to start taking the steriods the day before. Gosh how i hate the seriods, I know some people have loads of energy but for me it just means days of not sleeping.  I also found another lump just below the one I already have and the guy I have seen has said we will review it at my next review and decide what to do.

Raitchr
Member

Re: May 2017 chemo starters

MJK I was so tired after 3rd FEC, more so than any of the others. Think my body just had enough poison and said sleep! Have tried to rest more in the last 2 week, in front of Wimbledon, to give me a better chance of coping with T. 

 

Still waiting for blood test results, they said they would ring but said that last time and never did!

 

H

treehouse
Member

Re: May 2017 chemo starters

Wolfe lol๐Ÿ˜‚
Drip drip drip here
WolfEE
Member

Re: May 2017 chemo starters

Just eaten 4 packets of instant noodles!!
MJK
Member

Re: May 2017 chemo starters

Great news Treehouse, here's to dance power. ๐Ÿ’ƒ
๐Ÿ’ƒ๐Ÿ’ƒ. Good to hear from you Heather. I've rejoined the planet after 4 days spaced out by 3rd FEC. I'm looking forward to TASTING food again...
treehouse
Member

Re: May 2017 chemo starters

Neutrophils up to 4.5.๐Ÿ˜‹Treatment 4 here we go ๐Ÿ˜€
treehouse
Member

Re: May 2017 chemo starters

Currently sitting on Chemo ward. Platelets gone up from 50 to 140 yay ( excellent dancing ladies)
RBI gone down to 89 so they have booked a blood transfusion Saturday morning.
And neutrophils are down to 1.3 so they have done another blood test and if they are not up to 1.5 we will delay. I have a line in ready just in case. Second time lucky. She mentioned a pic line . I sai nooooo. ๐Ÿ˜ฉ
feelthefear
Member

Re: May 2017 chemo starters

I know what you mean about wandering off to secondaries wande. I think we've all visited at some point. I decided a while ago not to worry about what ifs. We have enough to stress about without letting our imaginations run away with us. The odds are hugely in our favour that we'll move on from all of this free from cancer. X
Mishy18
Member

Re: May 2017 chemo starters

Hey Annie how you doing since being in hospital hope you are well now x just started mine yesterday not to bad although needed to take sickness meds as soon as I could this morning for nausea xx at least I can say I have done the first one only 5 more to do xx