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October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

Glad you were able to get a break away with your girls to remember your dad Jencat.

it was the 2 year anniversary of my Dad’s death on Sunday. Sending love x

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Re: October 2017 Chemo Starters

So sorry to hear about your cat x big hugs and lots of love x

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Re: October 2017 Chemo Starters

Hi Jencat ❤️I’m glad you and the girls were able to celebrate his life all together ❤️ Have you thought any more about another cat? I know it’s early days but you’ll be able to give one a beautiful home and lots of ❤️💕💕Shi xx

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Re: October 2017 Chemo Starters

Shi, I'm going to send you try replying in two parts as I keep losing my messages to you! The girls and I decided that Dad would want us to do something nice last Tuesday or although there were still some tears of course. We stayed at my ex's caravan, which is only a few minutes from a fairly remote beach, so we were able to have a nice walk together followed by fish and chips xx

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Re: October 2017 Chemo Starters

Shi, I keep trying to reply to you, but for some reason your posts seem to not send or I lose them! I will try again in a while! xx

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Re: October 2017 Chemo Starters

Hope you had a lovely time in Iceland Susie 🙂 Thank you for your kind thoughts. I'm coping with the chemo ok so far, but still in some pain from.the bc. Hope you are keeping well and say hello to the girls from me  x 

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Re: October 2017 Chemo Starters

Thank you Chaffinch for your kind thoughts. Hope you are doing well x

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Re: October 2017 Chemo Starters

Sorry to hear about Oscar Jencat 😢😘

thinking of you as you go through treatment 😘 

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Re: October 2017 Chemo Starters

Hi Jencat

 

I've just returned to the UK after a short break to Iceland and caught up with your news. Thinking of you and sending hugs ❤❤❤❤❤❤❤xx

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Re: October 2017 Chemo Starters

Thank you Jill for your kind message. You're right, cats are very calming and I found them to be a great comfort when I went through chemo last time and during my dad's illness and death. Oscar was such a lovely affectionate cat, where I was he'd be there too xx

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Re: October 2017 Chemo Starters

Jencat sending you a big hug - what a difficult week for you .I still miss all my cats - had quite a few -4 at one time - 2 sets of brothers that didn't get on ! They are lovely calming companions .

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Re: October 2017 Chemo Starters

Jencat ❤️ I am so sorry to hear your darling cat has passed on ❤️ I know you won’t feel like even thinking about another cat, but please think about it, they give such ❤️And companionship Jencat it will lift you having a little being to look after ❤️ And come for a lap snuggle while you take each step with your treatments ❤️ I think all of our pets helped us through before and another little cat has got a lot of ❤️To give and you have a lot of ❤️To give to a new little cat ❤️ It’s difficult the first anniversary Jencat and sending big 👭❤️👭to you for that, release a balloon or scatter some petals somewhere or do something that you used to do together ❤️ Celebrate his life ❤️ He wouldn’t want you to be sad ❤️💕💕Shi xx

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Re: October 2017 Chemo Starters

Ps buddyfan, thank you for the reassurance about the bone mets 😊 xx

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Re: October 2017 Chemo Starters

Thank you so much buddyfan for taking the time to message me, I really appreciate it x I'm a bit up and down tbh, but it's a difficult time at the moment anyway, not just because of bc and chemo, but my lovely cat died last Sunday and the 1st anniversary of my Dad's death is this Tuesday. 

I'm coping with the chemo fairly well, but in pain and discomfort still because of the bc (onc said the chemo will help with this as the tumour shrinks, so hopefully she's right) So glad to hear that your wheezing isn't due to anything serious and something you haven't got to worry about x

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Re: October 2017 Chemo Starters

Hi Chaffinch, thank you for your kind message x unfortunately my lovely cat Oscar suddenly took a turn for the worst last Sunday evening and died at home with myself and my girls with him. He was only 5. I miss him so much, he was my little chemo buddy last time. An emotional time-losing our cat, starting chemo last Monday and this Tuesday will be a year since my dad died xx

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Re: October 2017 Chemo Starters

PS The HOPE course I mentioned was a Macmillan run thing. Can't remember what the acronym stands fir but it was about coping with cancer going forward. I found it useful, it got me out of that hole of finding out about the first mets..

🤗🤗🤗💗🏄‍♀️🧜‍♀️🤿🐧

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Re: October 2017 Chemo Starters

Sending hugs Jencat, hope they can support your puss cat for a good while, they are lovely calming companions 😘

hugs to you too buddyfan hope the radiotherapy goes well 😘 

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Re: October 2017 Chemo Starters

Jencat, I don't think it's an NHS restriction, I think it's medical in that you shouldn't have too much radiation to the same spot too soon. My sacrum will have been zapped twice by end of next week. Once with one day's hit last Nov and next week's treatment will be over 5 days, specifically to reduce side effects. I've had the scan and they're using the same tattoo. I think the tattoo is just the line up point, not specifically where they zap.

Hope you're coping with the whole stress side if it. I slept through the night last night, first time for ages. Distraction therapy is the key. I started a stained glass course. Nightmare, hardest thing I've ever attempted, especially since I've got my paralysed arm. But I'll persevere and will have a lovely piece at the end and actually, I would carry on and do other pieces but my back is too debilitating. So, back to the embroidery, much easier.

Enjoy what you can. The HOPE course said note three good things/feelings/thoughts that happen everyday, however small.

 

💗🧜‍♀️🏄‍♀️🤿🐧🤗🤗🤗

 

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Re: October 2017 Chemo Starters

Hi Jencat,

Maybe you want to check with your onco if it is technical you can't have the same area radiated two times or it is not offered under NHS. I posted a link in this thread before which is about the radiation therapy for breast cancer in USA. I am no medical but my understanding technically it is possible. Besides, like Shi said, the 1st time radiation is usually to the breast and maybe nodes and collar bone. My (sternum)  met is 1 inch exactly right above my tattoo in the middle of my chest. Again I am no medical. I simply guess the tattoo is the borderline of radiation. 

I had requested my onco if I can have radiation to the 'dot'. He rejected me and only said my first onco expected it can be cleared by the chemo. After finished all the active treatment, he told me the lesion is 'rotted' (yep, he used this word though my 3rd onco didn't quite understand at first and later explained the cancer is gone and leave a hole. In my recent bone scan (in Dec or Jan), my current onco said the 1cm disruptive tissue is healing

and only one-tenth left and hardly seen on CT scan.  

At first,  I thought you might be able to get some 'curable' treatment like surgery and immediate radiation to the tumor bed and the sternum 'dot' then chemo.

 

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Re: October 2017 Chemo Starters

Oh huge hugs Jencat. I know what you mean by reading things. Last year, I was looking through my online health records for which travel jabs we might need. When I saw that I am on gold palliative care, it really through me. It's that word, palliative, although I know it just means care. Similarly, I daren't ask how long I may have with this increase in bone mets. Had the first capecitabine cycle review yesterday. As my sacrum area is now numb they are going to radio zap it again, but over 5 days. On a plus note, my bloods showed lowered ALP indicating less bone activity. Still no where near the normal level. Also, my wheezing is much better. Maybe I had an infection since before Christmas and the steroids for the rads sorted it. Who knows, I just know I'm grateful that I'm not worrying that it's spread to my lungs.

Jencat, re your chemo shrinking your bone mets, I was told that it's hard to spot a reduction in mets in the bone, just due to the bone structure damage the mets will have caused. Just remember, you don't die of bone mets, or at least that's what I understand. 💗🏄‍♀️🧜‍♀️🤿🐧🤗🤗🤗🤗🤗🤗🤞🤞🤞🤞

 

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Re: October 2017 Chemo Starters

Shi, from what I can gather, it is the lymph node that caused me problems last time that has reared it's head again! I had a lot of radiotherapy and I assume my sternum must have also been targeted. I'll check with ED tomorrow. 

That's lovely to hear about the lady who is 20 years on from her SBC diagnosis :cathappy: Do you remember which thread you read it on? 

I've been offered some counselling with Macmillan, which I think's a good idea. Unfortunately the first date is on the 17th March, which will be a year since my dad died, so I don't think it'll be a good idea to go then as I'll already be emotional and I'd like to spend the day with my girls and family. xx

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Re: October 2017 Chemo Starters

Oh and to add to it all, my 5 year old cat has got kidney failure. Took him for a check up at the vet's today and he's lost more weight. He's got to go back on Friday for a fluid infusion, but the vet said I should start preparing myself that I might have to put him to sleep before too long! He's such a lovely natured cat and a good companion when I had chemo before and couldn't face human company xx

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Re: October 2017 Chemo Starters

Thank you Meesh xx

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Re: October 2017 Chemo Starters

Jencat, sorry to hear you can’t go on the trial. It must feel very daunting having to face it all again. Use the forums as Shi suggested. Remember we’re all here for you. Sending love, hugs and strength to you 😘😘

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Re: October 2017 Chemo Starters

Jencat, how is the nibble in the same area that you had rads before? Wasn’t that just targeted to the breast first time? I think it’s worth you querying for sure see what your Ed thinks when she gets home tomorrow. I read a wonderful post on the threads a few weeks ago of a lady who was 20 on from her secondary diagnosis 👍 I’m sorry I can’t remember who is was but it is something I wanted to tell you I saw because it was inspirational and she is living well with her secondary 👍 use the threads Jencat, people who are living with secondary will be able to 👭 guide you ❤️❤️ 💕💕Shi xx

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Re: October 2017 Chemo Starters

Thanks Shi x I did mention radiotherapy when I saw my onc, but she said I'd already had it, so couldn't have it there again or maybe only one session. I've heard from the chemo unit today, got pre-chemo meeting on Thursday and then will start chemo next Tuesday or Wednesday. I think I'm going to have to dig deep having it, before it was for a cure, now it's not, although hopefully it will noticeably  shrink the cancer I think I'll probably feel a bit better when ED gets home tomorrow, she's very positive! xx

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Re: October 2017 Chemo Starters

❤️Jencat ❤️ not the news we were all hoping to hear for you ❤️ have you discussed some more rads to have a go at the nibble? Might be worth asking, also the ask the nurse facility on here could give you some support and guidance ❤️ you should also ask you unit/local Macmillan if there are any groups nearby that you can join so you’ll have extra support of more amazing people too ❤️❤️all the oct17 girls and sending you big ❤️❤️❤️❤️❤️❤️❤️❤️❤️💕💕Shi xx

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Re: October 2017 Chemo Starters

Just spoken to my onc and unfortunately my tumour isn't a match for the new chemo, so will be starting Carboplatin sometime next week. Feeling quite low as being TN my treatment options are more limited. I was fairly ok about it all before with the spot to my sternum being so small and the possibility of having this new chemo. Now I feel as if the reality of the situation is hitting home and I'm not feeling so positive xx

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Re: October 2017 Chemo Starters

Thinking of you and sending hugs Jencat. It's always harder to see things on paper. Hope your appointment goes well and remember we are all here for you ❤xx 

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Re: October 2017 Chemo Starters

Sending hugs Jencat, it is hard seeing things on paper. Hopefully good new about the trial, either way they seem to want to throw all guns blazing at it to give you as many options as possible 😘 

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Re: October 2017 Chemo Starters

Jencat

 

Oh my darling i am sending lots of love and hugs 

 

Helena xx

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Re: October 2017 Chemo Starters

Sending lots of love and strength Jencat xx It is so hard to see it all written down, I hope you get your plan sorted soon lovely. Always thinking of you 🤗 

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Re: October 2017 Chemo Starters

❤️Jencat 🤞🤞🤞when you speak to your onc tomorrow it’ll be good news about the trial 🤞🤞🤞❤️💕💕Shi xx

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Re: October 2017 Chemo Starters

Sending you a hug Jencat - always harder seeing things written down than delivered by a human being .I hope you get good news about your chemo .x

 

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Re: October 2017 Chemo Starters

Feeling low today and the first time I've had a good cry since my diagnosis 3 weeks ago! Received a letter today about the meeting I had with my onc and although it didn't say anything different than we'd spoken about, it was hard to see it all in black and white. It didn't say I had SBC, but a local-regional recurrence, that's inoperable, so palliative chemo rather than curable, which I knew, but found it hard to read. I also had a missed call this eve from my onc, which was probably about which chemo I'm going to have, so upset about that as well now! x

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Re: October 2017 Chemo Starters

Hi Susie, lovely to hear from you and thank you very much for your reassurance about a delay in treatment. Yes, fingers crossed (and toes!) that I can have this new chemo, although being realistic I know it's more likely that my biopsy won't meet the criteria for it. With the waiting around to start chemo, sometimes it feels a bit surreal that I'm going to be having it again fairly soon, everything around me seems normal! xx

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Re: October 2017 Chemo Starters

Hi Jencat

 

The new chemo sounds promising. It seems that your onc is doing all he can to get you onto the newest treatment. Being diagnosed myself as TNBC I try to keep up with any new developments as I am very much aware that we have a much higher chance of recurrence than other breast cancers. I understand your concerns regarding a delay, my treatment was delayed as I asked to be treated my local hospital and I also volunteered to go on a trial. 

I was assured too that a short delay wouln't be an issue.

 

Sending you hugs ❤❤❤❤

Susie B xx

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Re: October 2017 Chemo Starters

Thank you so much buddyfan x I think you might be right on the exercise front. My elderly dad would try and go for a walk most days and always said 'if you don't use it you lose it'. I don't think I exercised enough when I had chemo, my muscles felt very weak afterwards.

If I have the new chemo, it will be every week for 3 weeks (2 different chemo's weeks 1&3,1 type of chemo week 2) and week 4 rest etc. If I have the other chemo it will be the three weekly cycles like we had Oct '17. If I have the weekly chemo I won't be able to have it at my local hospital as it's not available there yet because it's so new. I'll hopefully find out next week what's happening. I'm a bit anxious I haven't started chemo yet, but my onc assures me that a couple of weeks delay won't be a problem.

Hope you're not in much pain today buddyfan xx 

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Re: October 2017 Chemo Starters

Jencat, wow, glad you've got something that sounds hopeful. They're really going at it with all guns. Is the chemo similar to our first lot, where we had an infusion then weeks to recover before next infusion ? I wish you all the luck in the world.

 

Re my pain, I'm already on loads of painkillers for my paralysed arm so I think that helps. I know I must start trying to excersise more. I'm not even driving because my dh insists on running me everywhere. Not even walking round Tesco anymore, he does that!

 

Hugs to Jencat.

 

💗🧜‍♀️🏄‍♀️🤿🐧

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Re: October 2017 Chemo Starters

❤️Jencat 🤞🤞🤞you get the ok for new chemo 🤞🤞and you Do whatever you want and need to do Jencat, there are no right or wrongs ❤️❤️you know that, we are 👭👭 and buddyfan will get her our and drag the train driver behind the train if he doesn’t start behaving himself 💕💕Shi xx

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Re: October 2017 Chemo Starters

 Morning buddyfan, Shi and Meesh, I tried to reply to you yesterday, but my message disappeared! Thank you very much for thinking of me and for your kind messages x I'm ok most of the time, although in some pain and discomfort-onc said this will ease once I start chemo. I still don't know when I'm going to be starting it yet, but probably sometime during the week of the 9th March. The delay has been because my onc wanted me to have the chance to try a new chemo only approved by NICE last week and which seems ideal for me and has shown promising results in trials. (I think Mai has mentioned it in a thread) There was a meeting on Tuesday and my onc phoned me Wednesday eve to say that I met the criteria and was accepted to have it. However, part of my biopsy now has to be analysed to see if it has PDL1, which my onc thinks I only have a 40% chance. I'll find out next week, so fingers crossed! If not, I'm going to be having Carboplatin, but I don't know how many cycles. So everything is a bit up in the air at the moment!

I think I must be burying my head in the sand a bit because I still can't believe I've got SBC because the spread to my sternum is so small, in my onc words "a nibble", although of course I'm also grateful that it's only that. I'm hoping the chemo will make it disappear!

buddyfan, I'm so sorry that you're in so much pain with your back, I can imagine it must be very debilitating and upsetting for you. Could your onc give you some painkillers to help? Thinking of you xx

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Re: October 2017 Chemo Starters

Hi buddyfan, if you don’t want to use udderly maybe your unit can prescribe something for you on cream front that’s ok to use and won’t interact with meds ❤️ Glad the chemo drug is doable keep your fluids up ❤️ Just pace yourself your body will be adjusting to the new meds ❤️ And slow steady exercise will build up your stamina you are very strong minded and strong willed buddyfan ❤️ You’ll get there ❤️Jencat ❤️❤️ 💕💕Shi xx

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Re: October 2017 Chemo Starters

I'm now on day 12 out of 14 of the chemo drug capecitabine. It's doable. However, I don't know if it gets worse with subsequent cycles. I'm probably more tired but no nausea. My feet have a dry pad, but no peeling and my hands are OK. Roll on Saturday for my week off them. Worse thing is my back really. I'm living on ibuprofen, otherwise it is too debilitating. Can't stand still for any amount of time but walking is OK. Mind you I'm so unfit and puffed out at the slightest bit of exercise. Jencat, hope you're coping. 💗🏄‍♀️🧜‍♀️🤿🐧
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Re: October 2017 Chemo Starters

Hi Buddyfan,

 

How’re the tablets going? I use some foot cream from the hemp range from the body shop. I used to use the hemp rescue balm which was brilliant for feet but they’ve stopped doing that ☹️ Not sure if it has parabens in though. 

Jencat, hope you’re doing ok 😘

 

sending you both love and hugs 😘😘

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Re: October 2017 Chemo Starters

Oh poo, udderly has got parabens in it. Do I need to worry about that anymore? Any other best creams for saving my feet?
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Re: October 2017 Chemo Starters

Hi Jencat, I hope you're coping. Have they sorted out your forward plan? I've started capecitebine, the chemo drug. Shed load of pills, twice a day for two weeks then one week off. I'm off to get some udderly cream now to try and save my feet. 💗🧜‍♀️🏄‍♀️🐧🤿
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Re: October 2017 Chemo Starters

Hi buddyfan ❤️ Your spoil yourself and have a rest tonight, that’s been a long day and a zapping on top 😎 did you have any decent music in the rads lounge this afternoon 😘💕💕Shi xx

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Re: October 2017 Chemo Starters

Well, a long day but they gave me my rads tattoo in am and zap late pm. So at least all done in one day. Feeling tired now and not looking forward to the possible increase in pain for couple days. But hopefully it might then improve pain. At least that's what I hope.
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Re: October 2017 Chemo Starters

Jencat

i have read your post when I was first diagnosed as TN and think you may have had messaged me at some point. I am sorry to hear about your recent news but would echo what Shi said about considering trials. Prof Schmidt at Barts is always running some and he is a specialist in that field and i’ve heard some people have had good responses. Worth exploring.... 

wishing you all the best and fingers crossed for you and that you have a good and productive consultation today

Hugs

Aurore

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Re: October 2017 Chemo Starters

👭❤️ For this afternoon Jencat. Also see if there are any trials you can get on Jencat get your daughters to google trials and then bring up with your onc, there are new trials happening all the time as they develop new treatments ❤️ Worth trying ❤️💕💕Shi xx