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May 2017 chemo starters

Raitchr
Member

Re: May 2017 chemo starters

Thanks Mai7, I will have a read later, had a quick look and there is so much useful information.

 

Going out for lunch with Mum and family to celebrate last chemo, our 16th Wedding anniversary and Mum's 80th birthday! Wow this has been on the calendar since start of chemo and thought it would take ages to get to this day!

 

Heather

Mai7
Community Champion

Re: May 2017 chemo starters

Raitchr, this link explains the I3C and Dim:

https://www.canceractive.com/cancer-active-page-link.aspx?n=1417

 

 

Anniej
Community Champion

Re: May 2017 chemo starters

Jay, my Onco has ok'd me taking Immunace , which is a vita biotics and antioxidants. The tablets contain vit C, zinc and selenium. As we all know, cancer just doesn't like selenium. As I am now on Letrozole, an aromatise inhibitor with achy joint side effects, she's also suggested I take glucosamine. I've found one that includes chondroitin. Hoping this helps combat my radiotherapy SE's. 

Good luck all you ladies battling on to the finishing line. X

Raitchr
Member

Re: May 2017 chemo starters

Re seroma, I was told by my BCnurse to put hands in armpits and flap elbows like I was a chicken with wings to help seroma fluid drain. It only collects there as the lymphatic system has been disturbed during surgery so it needs gentle encouragement to drain it away. 

 

H

Raitchr
Member

Re: May 2017 chemo starters

I only had sentinel node biopsy which tested first 4, all were clear. Can also recommend do all exercises given, I did mine after each meal so I had a routine and didn't forget them. The physio signed me off after first checkup with them as had full range of movement.

 

Think about what you wear to and from the hospital. I had to dress myself to come home. I didn't have drains or a dressing on scar. I wore a strappy vest top with loose shirt over the top and trousers. You need to think about drains and what is comfortable.

 

Take a note pad so you can write down instructions for meds or anything else they may tell you on discharge from hospital. I was a bit groggy the next day. Keep up with meds every 4 hours for a few days even if you don't feel much pain as like the nausea on chemo it is hard to control it once it kicks in. I found taking paracetamol in the day every 4 -6 hours then morphine or tramadol at night to help me sleep. Take meds to bed with you in case you need more in the night. Also write down what time you took meds each day so you know when the next ones are due. 

 

You may get seroma fluid on Mx side after a week or so. Don't worry it is natural, it feels like a waterbed on your chest. Gentle pressure hugging the heart pillow helps and nurse can drain it but they don't like to as it can cause infection. I had 150ml drained on my 6 week check up, it never came back after that.

 

Also I choose to sleep in the spare room for a few nights just so I was comfortable and to make sure DH didn't knock my scar as no dressing it felt vulnerable!

 

Will try and think of other tips, it seems ages ago as had Mx on 17 March.

 

H

Jay68
Community Champion

Re: May 2017 chemo starters

Hi MJK - I've heard the node incision is more painful than the mx one. With the chemo i'm now used to drinking lots of water! Yes I've heard about the exercises but told I won't have to do them straight away The op still seems such a long way away - and it isn't really (19 Sept) but I've still got final chemo (this Thursday) to go along with side effects......! Got a family wedding to go to the Saturday before the op date - so lots to focus on....
MJK
Member

Re: May 2017 chemo starters

Hi Jay, I had a full node clearance (26/27 infected). I would recommend an overnight stay. I went in at 11 but didn't go to theatre until 4. They actually provided a sleep mask and earplugs (as well as lots of toast). Drinking lots of water helps flush out the anaesthetic. Interestingly, the woman in the next bed has her chemo at the same time as me. Post surgery, rest up but do the exercises as they will get the movement back.
Mai, I was very careful to keep my head clear of brambles and we picked on a side path so amy tribble trouble wouldn't have been seen.πŸ‡πŸŒΏπŸ–‘πŸ™†
Jay68
Community Champion

Re: May 2017 chemo starters

Thanks Heather - I've got a triangular pillow already - they're great for sitting up in bed - especially when I've got bad heartburn! I've been experimenting with it to see what I can do with it for after the op. My husband's going to make me a pretty new cover for it too!

My breast nurse said the hospital give me a heart shaped pillow for comfort and they also provide a bag for the drains to go in - apparently I'll have two drains!

Any other tips you can think of, I'm truly grateful. Thank you. J x
Raitchr
Member

Re: May 2017 chemo starters

Jay, also get a triangular pillow (Amazon or Dunelm) to prop you up in bed, I found I could wedge the pillow under my op side to make me comfortable and not roll on to my side.

 

I also got a heart shaped pillow from a cancer charity on facebook. It has adjustable ribbons over your shoulder and you put it under your arm and it protects your op scar, great for in car on way home from hospital. I used it lots when sat on sofa to prevent my scar being knocked by my boys or anyone hugging me.

 

H

 

 

treehouse
Member

Re: May 2017 chemo starters

Can't believe 2 of you have last one this Thursday. So pleased for you both. πŸ‘
I have appointment with BCN this wed to discuss surgery and post surgery issues and sign forms. I don't have a date yet.

My brother is a biochemist and he recommended DIM to me and liposomal vitamin c. I have them ready for after all treatment.
Jay68
Community Champion

Re: May 2017 chemo starters

Thanks Heather - much appreciated - this is the way I am thinking too, as much as I'd really love to go home - I may be better just staying overnight to ensure all is OK. I've noted the ear plugs and eye mask - thanks for the tip!

I can't wait for Thursday either - as you say it's crazy how when I started on 11 May - the end seemed so far away! Let's just pray our bloods are good to go!!!

Jay
Raitchr
Member

Re: May 2017 chemo starters

What is I3C and Dim???

Raitchr
Member

Re: May 2017 chemo starters

Jay68, I had my op in the afternoon, the surgeon only opereated each day in the afternoon. I didn't go to theatre until 4pm as lady before me had complications so mine was delayed. I stayed in overnight as I had a bad reaction to the radioactive isotope and the blue dye used for sentinel node biopsy. I was prepared and had packed an overnight bag anyway as we live so far away from hospital it made sense to take it. I was quite pleased to stay in for one night as being told it was a day case I was a bit worried that I would be sent home in pain. I had my own room and was monitored well with enough pain killers to be comfortable. I was sick a few times from the anaesthetic and didn't sleep well as it was so noisey (take ear plugs and eye mask!).

 

Can't wait for Thursday to be here to get last chemo, it seemed like such a long way away when I started on 9th May!!

 

Heather

Jay68
Community Champion

Re: May 2017 chemo starters

Hi Mai - I'm going to speak with the onc about supplements for after treatment. I am considering a multivitamin and definitely going back on my cod liver oil capsules! I've read it takes up to 6 months for our immune systems to fully recover from chemo - that's a long time when winter is just around the corner!

Jay68
Community Champion

Re: May 2017 chemo starters

MJK - thank you for your mastectomy advice - I've got to be at the hospital at 1pm on the day of the op but I won't know where I am on the schedule until I arrive and although the surgeon says - "you go home the same day" - my breast nurse advised me to consider opting to stay in - but I have to tell them of my intention otherwise it could end up, if there arn't any staff to cover overnight, that I will be transferred to our larger hospital which is further from home - which I obviously don't want!  I'm in two minds what to do at the moment and just getting as much advice from those who have been through it.  Did you have any lymph nodes removed?

 

I too have a secret stash of pots!   I'll be needing them next weekend!

Mai7
Community Champion

Re: May 2017 chemo starters

I'm doing well thanks and have been getting out and about a bit. Yesterday I had to go and get some wig shampoo/revitaliser as I had completely run out. We've been doing a few local walks which has been really interesting, discovering new footpaths we didn't know existed quite close to home. I did my last of 3 filgrastim injections today so I hope that works and I don't get a third week delay. I just feel like I'm treading water at the moment - still doing all the right moves but not getting anywhere!  My Son came home from his camping holiday yesterday so it's been nice to spend some time with him.  

 

MJK, glad you didn't get stuck in the blackberry bushes! We just finished the last of the second apple and blackberry crumble I made tonight. 

 

Treehouse, glad you have a nice coastal trip to look forward to before the end of Summer.

 

Has anyone thought about supplements after treatment finishes. I'm looking to take general multivitamin and D3 & K2, B complex, CoQ10, and have been reading up on I3C & Dim. I'll probably also take some collagen and glucosamine temporarily whilst everything is recovering and growing back.  I'm also going to drink matcha tea regularly, add turmeric and black pepper regularly, flaxseed, eat mushrooms (for the beta-glucans), cruciferous veg, berries anti-cancer/anti-inflammatory/immune-support foods.  There are so many supplement suggestions out there you can't obsess over them all!  Just pick a few and go for it even if it just helps to cure your anxiety!

Kala
Member

Re: May 2017 chemo starters

Just okay xxx Hiding away under the sheets. Number five done and on day four xx Hope your doing ok Mai . I can't keep up with everyone lol. Pain relief on tap and hoping I get to taste food in the next couple of weeks instead of cardboard and slimy yuk 😻😻😻xx Will catch up once I have re-read the last two weeks of threads xxxx Keep going girlies your all amazing and super brave  πŸ’ͺ🏻

MJK
Member

Re: May 2017 chemo starters

Rice pudding is a great one for the dozy tox hell yucky mouth. I have a secret stash of pots. We went to our local country park and picked blackberries today. As my son put it 'We can eat crumble while watching strictly'. I'm on day 2 with steroids and filgrastim starts this evening. Jay, I had an afternoon simply mastectomy op with an overnight stay, they kept all 3of us operated on that afternoon in and we all appreciated it as I don't think any of us were strong enough to go home. I was home the next day and recovered fairly quickly.
Jay68
Community Champion

Re: May 2017 chemo starters

Heather - I've got my bloods and onc on Monday and I'm exactly like you - with just one more chemo to go I don't want to fall a the final hurdle! I don't want Thursday's treatment put back ..... pleeasseee!

 

and another question Heather if you don't mind!?! - when you had your mx - what time was your operation and did you stay in hospital overnight?  

 

J x

treehouse
Member

Re: May 2017 chemo starters

Thanks Jay I will look out for them. Don't think they would last long in this house. Husband eats it cold out of the tin ( he does not have many bad habits but that is one of them)
Jay68
Community Champion

Re: May 2017 chemo starters

Treehouse - Just a tip - but you can buy those tiny pots of rice pudding which are ideal - come in pack of 6!
treehouse
Member

Re: May 2017 chemo starters

Ooh rice pudding!
Have not had that for ages. Will stock up thanks Jay.
How's everyone doing?
Mai on the jabs?
Wolfee? MJK?
I made it out of the house today. The kids had a session at a climbing wall. There was an awkward moment when the instructor asked me why I wasn't joining in.
Wearing a scarf avoids those questions but I had my wig on.
Jay68
Community Champion

Re: May 2017 chemo starters

Treehouse - pleased to see you've booked yourself a mini break for the bank holiday weekend - enjoy! We've just returned from our night away beside the seaside and it was really enjoyable - sun shone too so was the icing on the cake!!
Jay68
Community Champion

Re: May 2017 chemo starters

Treehouse - glad you found something to eat which you can put with "custard and cream" - if you like it, try rice pudding - and another that works for me is ice cream with chocolate custard!

Cathysid
Member

Re: May 2017 chemo starters

Thanks for your reply, treehouse. I am lucky that my mum is happy to help me too.
Great to hear your lump has vanished! Good luck with your last one.
Cath x
Daffodil54
Member

Re: May 2017 chemo starters

Thank you all for the advice. I am doing most of that so will hang on and trust that next week will improve. I may try Paracetamol today. 

I just have to remember that I am over the half way mark. 

Have a good weekend everyone.

treehouse
Member

Re: May 2017 chemo starters

Hi Cathy
I think that is my combo ( docetaxel, carboplatin, herceptin and perjeta) although they have other names.
The treatment days are long first took 8 hours now takes about 6.
I have just done no 5 ( one more to go!!!!!)
I have 3 days of steroids ( day before, day of and day after treatment)
I find my worst symptoms hit when the steroids run out and I generally feel ok when the injections have finished.
So days 3 to 8 I am pretty useless and my mum helps out with the kids lots. ( you will need to accept help)
Pain in my neck shoulders and back are the worst. Also upset digestive system from mouth to the other end.
I am on day 8 today and am planning a minor day out with the family.
It is tough but it does pass and my onc can no longer find my lump so it is worth it !!!!
Keep in touch there are always little things that crop up and someone will have experience or advice to share.
Hair started falling out after week 3 and although that is a big issue at the time I am bald and proud right now. X x x
We are with you every step of the way .
Cathysid
Member

Re: May 2017 chemo starters

Hi ladies,
I will be starting chemo next week and wondered if any of you are on the same as me TCHP and what your experiences of this combo are, any helpful tips too? I want to be as best prepared as I can be as I have 2 small children to look after. Any advice would be greatly appreciated!
Cath xxx
Trisha69
Member

Re: May 2017 chemo starters

I was using paracetamol and a codeine based tablet for the aches, then resulted to Oramorph.  Have found the Epsom salt baths helpful and a heatpad/hot water bottle.

Re the mouth...  Difllam, Nystatin and Antacid and Oxetacaine Oral suspension helps as do the Gelclair oral rince sachets.  Also a mouthful of sorbet between mouthfuls of food. 

Ive just had second Docetaxel/Herceptin yesterday, was miffed it took 5 hours! Mindu the 1st one took 8!  Good luck sweetie xx

treehouse
Member

Re: May 2017 chemo starters

Hi daffodil. I was the same. As you finish injections it gets easier I promise. Many of us enjoy as soak in Epsom salts. I got some stronger painkillers after the first round ( co codamol) I have not used them much as they make me feel spaced out and I have managed the pain better since.
I promise it gets better hang In there. Sending hugs

Last night we booked a caravan for 3 nights by the sea over the bank holiday. It will be my good week and I can't have any surprises appointments as it's bank hol.
Can't wait for a little break. πŸ˜€
Raitchr
Member

Re: May 2017 chemo starters

Daffodil54, Try taking Clarityn hay fever tablets or similar brand which contains Loratadine, was recommended to me on another forum I am on. T is made from Yew tree sap so there is something in the hay fever tablets which helps.

 

I also use muscle soak bubble bath which helps to ease the pain or a hot water bottle can help.

 

I was told by chemo nurse I don't need anything stronger than paracetamol but I do have tramadol and morphine left from my op.Maybe call the helpline if it is really bad as they can get a prescription for something stronger or if you can wait until Monday see GP, you shouldn't have suffer.

 

Heather

 

 

Daffodil54
Member

Re: May 2017 chemo starters

Hi. I have just jumped on this thread from the June starters. I am finding my side effects from my first T hard to deal with. Terrible throat and muscle and joint pain. Any suggestions. I am using the mouthwash, taking Ibuprofen, but still finding it hard.

 

Trisha69
Member

Re: May 2017 chemo starters

Lol Tree house. I've been eating strawberry trifles and aero choc mousse. Can taste them too πŸ™‚ πŸ™‚ xx
busybeeS
Member

Re: May 2017 chemo starters

Hi Heather. I've been asked to go on the Add Aspirin trial and have met the relevant criteria. You can have a look at the website where there is a link to who can join the trial. There's lots of histology criteria as well as looking at your medical history. Ive still got to sign the consent form and i think it starts after radiotherapy but i'd need to double check.
treehouse
Member

Re: May 2017 chemo starters

Heather sorry your continuity of care has been so poor but good news about round 6. Dancing for you πŸ’ƒ.
Glad treatment went ahead Trish. Hope you got home ok.
Curly good to here from you.

After only eating half of my meals today due to the disgusting taste, I have finally found something I can put up with ...... custard and cream. I have just eaten the top off a trifle!!!!
πŸ˜‚πŸ˜€πŸ˜€πŸ˜€
Raitchr
Member

Re: May 2017 chemo starters

Have seen 4th different Oncology registrar in 5 months today, nothing like having to go through it all again each time. All good to go for 6th and final chemo next week, subject to bloods on Tuesday. Has given me different meds for oral thrush, tablets this time as told him drops were rubbish. Have appmt to see " an oncologist" in 6 weeks, whoever that may be! This is to discuss the process for the next few months. When I asked what that was he didn't know as I am not having rads. Assume it is 3 or 6 month review, he said we would talk about in at end of Sept.

 

He suggested Add Asprin trial but when nurse phone the research nurse they said no and gave me no reason. Anyone else heard of this trial or are doing it?

 

Have a good weekend everyone, hope you are all ok having had treatment this week.

 

I am doing the blood dance for me for Tuesday as can't fall at the last hurdle!

 

Heather

Trisha69
Member

Re: May 2017 chemo starters

10.mins to go:-) then hours drive home. Back in time For Corrie x
MJK
Member

Re: May 2017 chemo starters

Great to hear from you Curlyh. I hope all is good for Monday βš„.
Trisha I hope you're done and home in good time βš„βœ”
Trisha69
Member

Re: May 2017 chemo starters

Having no 5 as I type. Very tired. Said be done by 430but now 530 grrr. Know they very busy x
curlyh
Member

Re: May 2017 chemo starters

Catching up with all the posts...hope all went well today Trisha....glad treatment no5 done for MJK & Rosie...I had bloods done today for no5 on Monday..hopefully all will be ok and liver levels behaving...Treehouse glad you are having a better day though the lack of taste is so annoying and quite depressing at times but it does get slightly better though probably not back to normal till we have finished...I so agree with all your posts about  the thought of going back to work and what our new normal will be I do get a bit down trying to think past this treatment and how to move on hopefully there will be one of those courses in my area...hope everyone's se not too bad in the coming days πŸ˜€

treehouse
Member

Re: May 2017 chemo starters

Enjoy Jay. Give me a week avoiding germs and I will be right behind you.
Thank you all for dragging me through the tough times and celebrating the good.
We will get there.
πŸ’ͺ🏻❀️
Jay68
Community Champion

Re: May 2017 chemo starters

Brilliant news Treehouse - enjoy the good times x

 

Trish - good luck today - hope treatment goes well x

 

I'm off for lunch with work colleagues today and this evening me, husband and our son are going away for the night to the seaside - only 30 minutes from home but just can't wait for a change of scenery!!  It's the small things in life now that make such a difference!

Trisha69
Member

Re: May 2017 chemo starters

Lucky devil. Happy for you. Have a good day xx
treehouse
Member

Re: May 2017 chemo starters

Good luck today Trish.
I actually slept through the night and have woken up feeling human. And the sun is out.
Today is a good day πŸ˜€
Trisha69
Member

Re: May 2017 chemo starters

Will do. Just waiting clinic call. Have to leave st 11 xx
MJK
Member

Re: May 2017 chemo starters

I hope today goes well Trisha. I would take a couple of loperamide this morning to keep things settled and go easy on the veg for the first week of T.
treehouse
Member

Re: May 2017 chemo starters

Not sure what to suggest Trish. You are doing everything already. Drink lots and check your temp. I was allowed to take more Imodium if I had a second bout but it always cleared up after first dose.
best to take advice from your team tomorrow. Don't want to make things worse if you are already low.
Hang in there x x I know it's hard. The nausea came from nowhere for me in week 3 last cycle. Don't know why, I guess we are just struggling to recovery.
Big hugs
Trisha69
Member

Re: May 2017 chemo starters

Good luck xx
Rosie65
Member

Re: May 2017 chemo starters

Trish - yes maybe your stomach is complaining about the amount of food if you haven't eaten much lately. Hopefully the loperamide will do the trick. I've been prescribed that as had diarrhoea last cycle, got told off for not contacting the hot line but it just cleared up by itself.

 

treehouse - I have another 5!!  .....and weekly so no recovery time. The nurse said she may have to write   next to it  " do not use, this vein has had enough" to stop the nurses being tempted. I tried to show them my other hand but they just don't want to know! 

Jay68
Community Champion

Re: May 2017 chemo starters

Treehouse - big sympathies to you on your lack of taste buds - it really is the worse part for me - I too love food and when it has no taste and hurts to eat it's just awful.  But as you know - it does and it will improve but when you're going through it - it feels like its endless. Try something like a fruit pastille lollypop! x