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June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Hi ktk. Yes Im on a daily tablet for 4 years. I havnt started it yet as having dental treatment for bone density in my jaw. The iabondric acid can cause jaw necrosis so getting things sorted (hopefully) first. No one mentioned 6monthly infusions or vit d. Will ask onc about it. Hope you are feeling less achy today.
Kip
Member

Re: June 2018 Chemo Starters

Hi Ladies,

KTK - how did you find the Rads?  I am starting next week.  Any side effects, which moisturisers did you use? 

Just curious - what are all the infusions, jabs for?  I've never heard of them, should I be expecting some?

Kip

x

Member

Re: June 2018 Chemo Starters

Really? I was diagnosed in January and that was delayed due to hospital errors so I'm well outside that.
ktk
Member

Re: June 2018 Chemo Starters

Hi Sally, thanks for your reply. I think I read somewhere that they need to start the treatment within six months of diagnosis. I was outside this timeframe, and am not sure it is possible to meet that deadline!!! Keep me updated! Kxx
Member

Re: June 2018 Chemo Starters

Happy Thanksgiving Reddi! X

Member

Re: June 2018 Chemo Starters

Hi ktk,

I'm meant to be having the zometa infusions but haven't had any yet. Don't even know where I'm having it cos I was referred for a drug trial and was meant to have it at Guys but my participation in the drug trial is in doubt as a possible si de effect is dvt and as I've had one before they may not be able to lete take part, which will mean referring me back locally for it.

In the meantime, now 5 weeks after chemo finished and I'm losing hair like nobody's business. All since I've started the letrozole.
ktk
Member

Re: June 2018 Chemo Starters

Hi Val. Are you taking the tablets daily? I have an infusion every six months, just to remind me of the joys of chemo 🤣. I also have Adcal, calcium and vitamin D tablets to take. Very achy today but I’ve just had a nice bath which has helped. Kx
Member

Re: June 2018 Chemo Starters

Hi ktk. I have just finished rads and must say I am glad its over. Have onc app on 14/12 and he has prescribed ibandronic acid/bondorat but havnt started taking them yet. Hows yours? Val
Member

Re: June 2018 Chemo Starters

@Feenix Thanks so much for the link -- so helpful. I'd tried searching the forum but must have done something wrong in constructing the text string.

 

In case it's helpful to others, here's the direct link to the TUG discussion. 

 

A bit discouraging to see the long wait times for the procedure, but I'd half expected this once I knew it wasn't offered very widely. Who knows, maybe my BCN is wrong and I have enough tummy for one full-breast reconstruction. And if they get clear margins for the lumpectomy on the other breast, then that could be balanced with lipofilling. Once again, I need to head over to the surgery threads...

ktk
Member

Re: June 2018 Chemo Starters

Morning ladies. I’ve been a bit quiet as do the daily RT run, which finishes on Friday 😁😁😁😁. I was marked up for my three targeted treatments yesterday then went for my first bisphosphonate infusion. First go without my Picc, which was taken out after chemo. No problems though. I’ve woken up very achy this morning, almost flu like. Not as bad as chemo, but I hadn’t expected it!! Anyone else on bisphosphonates? How have you found them?

Love to all Kxxx
Member

Re: June 2018 Chemo Starters

Reconstruction TUG using 1 02 thighs 

This is an old thread about TUG

Kip
Member

Re: June 2018 Chemo Starters

Hello all,

Thanks for the nail advice Red Rose, I think mine may follow suit some time soon as they are definately going all white and looking extremely weird.   How are you feeling otherwise?

Sorry can't offer any advice re the surgeries, but I do remember being told about the butt/thigh operation.  My BCN showed me a port folio of photos of ladies who had had various reconstructions etc but I don't remember ever seeing photos of the sites the recons were taken from, thats a very good point!

I have spoken to my ONC nurse yesterday regarding the aches and pains I am suffering at the moment, and she said they are almost certainly a SE of the T part of chemo, its very common and not a lot you can do for it except ride it out.  She did, however, suggest taking Zinc and Magnesium supplements as the chemo destroys it and that can cause you aches and pains.  She also said up your potassium too, so to eat lots of bananas.  I'm going to try these and see if that helps... watch this space... (oh and you can take Paracetemol if you really need it).

CDC - had forgotten about Epsom bath salts. will send hubby out for that too... worth a try. 

Well the sun was out here briefly but it now looks so dark and rainy.  I have men trying to lay a new driveway for me and they keep having to dive into the garage and drink tea!   They've been 5 days now and still not finished... pray for sunshine..

Kip

xx

 

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Re: June 2018 Chemo Starters

Ps. Belated Happy Birthday 🎂🎉 xx
Member

Re: June 2018 Chemo Starters

Hi ladies. Just off to bed, but thought I would answer cdc, and then catch up with you all tomorrow. I have lost 3 nails now and the rest will be following shorty. Chemo hotline suggested rubber thimbles 🤷‍♀️🤦🏼‍♀️😂. But I have found that a tape I got from hospital when having zoledex injection works best as you can tear it to get it to the right size. Have been sticking the nail down to prevent catching it and once they off it’s so much better. Doctor wasn’t much help either when asked him. For now clean daily and cover with transpore tape to keep nail on. Going to ask at oncologist on Friday, so if find something better will let you know. Don’t force them as bleeding or open wounds can lead to infection and check they not red, sore, weapping or hot. Remember to keep eye on temperature 🤒 too. Hope that helps 😘 just what I have been doing xx
Member

Re: June 2018 Chemo Starters

@cdc I have been looking at SGAP (glutal artery/buttocks) and TUG flap (thigh) as I don't want to lose back muscle and may not have enough tissue for full tummy mastectomy (definitely not enough for two). The microsurgery techniques are quite specialized and are only offered by a few facilities, as far as I can tell. I would hope the Marsden is one; they must at least partner with a plastic surgeon with experience doing it. One big issue: it is very difficult to find images of post-surgery scars at the donor site or patient reports of recovery -- I think SGAP might be better for me on the latter front, but maybe not. It is quite frustrating.
Member

Re: June 2018 Chemo Starters

Thanks for the birthday wishes.  So glad it was such a sunny day for my trip to Brighton.  It’s been hideous today- wet and freezing.  Just a question- I am definitely losing my middle fingernail on the right.  There is a split all along the base and the nail is lifting off.  What do I do??? I don’t have any plasters.  Could I wrap it in micropore tape or something similar?  I think the other nails are going to follow suit soon.  Can’t see how I’ll save many of them as they all look discoloured and just plain odd!  Oh well.  I presume they just grow back eventually but just wondering how you protect the nail bed whilst your waiting.  Any ideas welcome.  

 

My LGFB session was interesting,  I don’t really wear make up usually except for a bit of mascara and lipstick so working out what to do with foundation etc was a revelation,  I did try to say I didn’t want any blusher as I have enough problems with facial flushing as it!  However, I was persuaded to try everything,  It was fun to experiment but when I went to pick my daughter up from school she looked at me quizzically and remarked that I looked like a goth! My OH has just got in from work and said. “It’s nice make up but It’s just not you’!  I’m now desperate to take it off as it feels heavy and uncomfortable. Still I met a bunch of lovely ladies and enjoyed the social side.. Also I’ll definitely use the cleanser and moisturiser etc....  

 

Hope everyone has a restful evening ahead.  I am still shattered so off for another nap.  Kip, I thought I’d got away with the aches and pains but as soon as I stop and lie down I feel my whole body aching and I understand what you mean about feeling a 100!  I seem to remember someone telling me that putting  Epsom salt in your bath can be soothing so I might try and get some tomorrow.  

 

Sorry I can’t help with the prostheses issue.  My right side is slightly smaller than the left but as I’ll be having further surgery in Jan I don’t think it’s worth getting anything in the mean time to even things out.  

 

My plan to eat loads to try to increase the fat on my tummy so I have enough for two reconstructed breasts, isn’t really working- i’m Just putting on weight everywhere else and feeling sick!! I’ll be interested to hear what the consultant at the Marsden says on Monday.  I’m sure I heard that they can use your thighs and I definitely have enough for two on them!  Has anyone heard of this procedure- I think it’s called TUG? 

 

Take care xxx

 

 

Member

Re: June 2018 Chemo Starters

Shi one side is higher than the other not bigger (although my husband says its not noticeable) so not sure if that will work will it? Ta. X

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Cdc🎂🎂🎂happy belated birthday 😘😘😘Linda, my unit gave me a half prosthesis thing that works really well to level me up and in the summer I pulled the stuffing out of the knitted knocker and padded bra out fine with that it was lighter and more comfy during summer. Hope that helps 😘😘👍👍Kip as long as you keep hydrated, pace yourself, air and cream skin, go bra less (scarfs dangled down the front help) 😎😎😎are a 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻And don’t forget extra points if you can get someone else up and 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Who’s waiting too ❤️❤️❤️ Moves like jagged by maroon 5 on the jukebox 😘😘😘have you all got your meet up planned yet? It’ll come round really quick when you’ve arranged it 👍👍💕💕💕✨✨✨Shi xx
Member

Re: June 2018 Chemo Starters

Shi do you wear padded bras and if so do they hide the lopsidedness? Thanks.x

Kip
Member

Re: June 2018 Chemo Starters

Hi all,

CDC - happy belated birthday too.. glad you had a great day, sounds perfect although very tiring.  I am getting a little apprehensive about the Rads but just want to get started with it, it will be a pain going every day and at a time when I should be starting Christmas shopping but havent!  EEK...but as many have said, after chemo nothing can be as bad.  Although I have to say, these aches and pains are awful, I feel 100 years old today, feet, toes, ankles, calfs, knees, bum and back all stiff.  I did manage to hula hoop for 10 minutes though and it did help to get things moving.  It is causing sleeping isues though, as I go to sleep no problem but get so stiff in one position that I have wake up adjust position and this goes on most of the night... also having hot flush in the night too but thats fairly manageable.  Keeping fingers crossed the aches and pains wear off as the chemo slings its hook!   (although have read it can take months/years to go... oh crikey).

Reddi - sorry to hear the pain is back again, focus on Thanks Giving and enjoy that.

Shi - Am up and dancing even with the 100 year old joints... hand bag down and bopping away...la la la la la...

Kip

xx