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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

This is a hard time for all of us Frenchie- in this strange world we are in at the moment, it’s hard to know how to feel.  I’ve just returned from my last chemo which means I should be celebrating.  But I was so wound up and nervous about protection and masks.  When I arrived there were hardly any patients in the waiting area which was good,  my appointment was at 2.30pm.  I eventually got my one hour infusion of Docetaxel at 6.30 pm.  They had booked 8 patients in with one treatment team at the same time.  But every time anyone asked what the delay was, no one on reception could tell us that.  It was up to the poor understaffed hard working nurses to tell us what had happened and they were so apologetic.  A couple of patients were in tears in the waiting areas.  Anyway, back home after 6 hours and feel completed knackered and what a total anticlimax to my last treatment.  

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Re: December 2019 Chemo Starters

Yeah, not the best! I think normally meeting the psychologist would be a separate appointment but as they are trying to minimise trips out of the home they are doing it this way. There is a wall between us so we couldn't actually see each other but then there's an open doorway so you can hear everything.

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Re: December 2019 Chemo Starters

Oh Frenchie.

That's such an awkward situation to be in, and not fair on you or her!

You take care x

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Re: December 2019 Chemo Starters

Thanks both. Mrs S, yes you're right, her cancer is a different type to mine so our situations are quite different. But it was hard as she spoke to the psychologist during chemo and without wanting to, I could hear the conversation so probably got more details than I otherwise would have. Over here the give you ice filled gloves and slippers to wear during taxol (1 hr) to help prevent nerve damage (a bit like cold capping for your hands and feet). So couldn't even distract myself with a book.

 

Yes, we are all confined at home, have been for the last 2 weeks. My husband does the food shopping and my only outing is for chemo. I have 2 children at home but schools are closed now so they're home too. We haven't been told 12 weeks but the oncologist did say today that even when things start to get back to normal I'll probably still have to stay home.

 

Thanks again xx

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Re: December 2019 Chemo Starters

Hey frenchie - we’re here for you love ❤️

What a sad story about the lady from chemo. A painful reminder of the line we’re all walking. Your feelings are completely understandable and detaching yourself is easier said than done. I can’t imagine there’s a single one of us who doesn’t get overwhelmed  by this and know exactly where you’re coming from. Wish I could reach out and offer you a big hug. 
Of course you’re gutted after that experience, then also to have the uncertainty about your own treatment. It’s just too much in one day. Some days are pitiless like that aren’t they - when it doesn’t feel like there’s anything but bad stuff happening and the situation is too painful to bear. 
You will find the strength to keep going tho’ love, and your mood will lift again. 
In the meantime, know that I am thinking of you and wishing you all good things, take care Frenchie and perhaps find some way -whatever you can at this time  - to treat yourself Xxx

 

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Re: December 2019 Chemo Starters

Hi Frenchie

 

Please don't get disheartened. The lady you met probably had a different type of cancer, different receptor responses and different distribution.

 

I am not Her 2 +, but am having weekly paclitaxel, following 3 x EC. Initially my consultant said 9 paclitaxel, then said 9 to 12 depending how I tolerate it (pre CV), now he has said he will stop it at 9. Apparently most people don't get to 12 anyway because of SEs. I had no. 6 last week and the aches, pains and fatigue have been really bad this week, so I'm not surprised that people don't make 12 if it's going to keep accumulating. 

 

I am just so grateful to be at this end of treatment, rather than newly diagnosed. I nearly had a fit when the nurse considered giving me a break this week. I just want to get them in now. Who would have thought I would be looking forward to having chemo?!

 

Take care and keep going. Stay positive. Are you in isolation in France? In the UK we have been told to stay at home for 12 weeks, other than hospital appointments x

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Re: December 2019 Chemo Starters

Hello everyone,

 

Hope you're all doing ok in the current context. Sorry I'm not very good at posting to support others and then just come on to post a woe is me message but I'm feeling a bit overwhelmed right now.

 

I'm now on weekly paclitaxel with fortnightly herceptin and feel very fortunate that side effects have been minimal so far. I had my fourth round this morning.

 

This morning I chatted to a lady at chemo who is my age (she's 41, I'm 42). She had treatment for BC 2 years ago and it has now come back as secondary so obviously the outlook isn't great and there are signs the chemo she is having isn't working. I know I need to distance myself and not get too carried away but it is clearly pretty close to home and I just felt so sad for her. She has 3 young children.

 

Then I had my phone consultation with the oncologist which went well but he said government guidelines (I'm in France) say that my treatment should be reduced from 12 to 9 sessions. I know that in lots of cases people don't do more than 9 for a variety of reasons and he also said that because I've only done 4, they will review that decision at the end of April depending on how things are going with the covid 19 pandemic they may allow me to go above 9. But I can't help feeling a bit gutted all the same.

 

Thanks for letting me vent! Lots of love and positive vibes to everyone xx

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Re: December 2019 Chemo Starters

Madcatlady I think you're right. I think even without this coronavirus crisis many people don't always feel as they expect to at the end of treatment. I have heard that a lot.

The vaseline has helped my nose, thanks but still got a sore throat. The doc prescribed thrush treatment on a phone appointment without even seeing it! I didn't think it was thrush as there no white patches. Took two doses and stopped after speaking to a pharmacist who said if it was thrush you'd know it. I think it is just a normal sore throat. 

Really hope it clears up soon as being in solitary isolation I ike to be able to talk on the phone.

Obviouly still talking to hubby a few times a day. It is horrible being separated but both trying to keep our spirits up. You don't have much choice in this situation. It's sink or swim.

Take care and lots of love.

Mc22

 

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Re: December 2019 Chemo Starters

So happy for you mad cat lady part of the journey complete 💞💃💪

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Re: December 2019 Chemo Starters

Madcatlady 😁😁😁👍👍👍❤️❤️❤️👏👏👏👏🥳🥳🥳🥳💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻💃🏻Well done 😁😁😁😁 ❤️😘💕💕Shi xx

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Re: December 2019 Chemo Starters

Awh madcatlady 🛎 the half way bell has been passed  

 

Your strength and resilience have taken you to the finishing line. Lovely image of you in the garden with cat and memory of chips. 

 

Youve done it! Congrats 

 

Love and blessings 

🙏🏽❤️🙏🏽❤️

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Re: 3 cheers for Madcatlady.... reaching a most awaited milestone

Thanks B4!

We're going to get there!

I feel much better having read all your lovely messages...❤

Sending lots of love to everyone.

xx

 

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Re: December 2019 Chemo Starters

Thank you, Lynne! 

Won't it be lovely when we can look back on this and say, WE DID IT!! 

xx

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Re: December 2019 Chemo Starters

Aww, thanks, rizzer! Thanks for dancing for me!

I've been making soup and baking today. I find flapjack, a bit like chips, soon sorts me out...😊

We're ALL getting through this, and what stars we are...if we can deal with chemo, other treatments and surgery in the midst of a global pandemic, what can stop us?! 🎖

xx

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Re: December 2019 Chemo Starters

Thanks Mc22. It's weird not feeling as I'd expected to at the end, but maybe that's more common than I thought. After all, it's a long, hard slog, and finding the energy is tough!

Here's hoping your sore nose is abating. Vaseline is great for dealing with it. Is it really runny too? Mine is like a tap with a broken washer...and when it starts, my eyes join in as I've got about three eyelashes left now. Grr!

How are your throat and voice now? It's a really grim side effect as you feel like an alien has taken up residence in your mouth and has no intention of sharing the accommodation....

How is your hubby feeling today? 

Each day will take you nearer being together again.

xx

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Re: December 2019 Chemo Starters

Hi MrsS1968

Glad to hear you had the treatment, and I can imagine how relieved you felt to get it done during what has been a very worrying week.

Hope you get through the next few days okay, and keep safe.

xx

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3 cheers for Madcatlady.... reaching a most awaited milestone

Hi Madcatlady

congratulations... isn’t it what v r all waiting for.... this moment.... I hope we all  reach this milestone soon and safely without any interruptions.

im glad to hear about the radiotherapy to be reduced to 1 week instead of 3. I am Still waiting for my appt with the clinical oncologist regarding radiotherapy.

lets see if I get the same, it will b a bit longer for me as they r giving booster dose as well.

 

lots of love 

😘😘

B4

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Re: December 2019 Chemo Starters

Hey rizzer, yes let's all celebrate the end of madcatlady's treatment. It is just what we need, something to celebrate.🍰🍰🍰

Sending lots of love to all.

Mc22❤❤❤

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Re: December 2019 Chemo Starters

Fantastic news @Madcatlady to be finished 👏👏🛎🛎. I know it is strange times and it is hard to feel like celebrating, but you’ve done it!  

 

Stay at safe and 🍀🍀

 

Lynne x

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Re: December 2019 Chemo Starters

Hey madcatlady! So pleased to hear from you and I tell you what, I’m celebrating 🥳 the end of your treatment for you albeit with a subdued form of online 💃  💃  💃 

YOU DID IT LADY!! Xxxx 

Sending you a massive hug and loads of love 

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Re: December 2019 Chemo Starters

Madcatlady  you have reached a milestone with having your last treatment and that is a real positive, even though you don't feel as you were expecting to. 

Thanks all for suggestions for remedies for dry nose etc. Vaseline sounds a goos idea so I will give that a try.

I have had a sore throat and husky voice for last 4 days and a bit worried as on my low immune week. Annoying as it is a strain to talk to long on the phone and I like to call hubby several times during the day, because as you know, we are having to isolate seperately. Had  a telephone appointment with doc and she prescribed thrush treatment but there are no white patches, just redness so not convinced and might hold off the thrush treatment. Asked for back up antibiotic prescription to keep by just in case needed. I don't have a temperature but will be relieved when it starts to get better. 

Stay safe everyone. I really appreciate your support and suggestions. It is tough being separated from hubby but we are each facing our individual challenges and the most important thing is that we stay strong and continue to support each other. We can do this. 

Mc22 xxxx

 

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Re: December 2019 Chemo Starters

Thanks Madcatlady

Had my treatment. Three more to go. You must be happy to be finished. I never felt so happy getting another one under my belt.

Such crazy times. I feel lucky that I was diagnosed in October and not now. Never thought that I would feel lucky about a diagnosis of cancer!

Take care x

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Re: December 2019 Chemo Starters

Thanks to Caroline, the Ghost of Chemo Past, for the message from the Dec 2012 group!

After feeling a bit odd and wobbly this week, being reminded that life goes on is a boost.

xx

 

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Re: December 2019 Chemo Starters

Hi Mc22

How are you and your hubby? As if this isn't hard enough...poor (both) of you. Staying safe is all we can do, but it must feel so hard.

It won't be for ever.

Sending lots of love.

xx

 

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Re: December 2019 Chemo Starters

Hi livers

That's wonderful news about the radiotherapy. One week possible instead of three! 

Sometimes a little chink of light shines through 😊

xx

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Re: December 2019 Chemo Starters

Hi MrsS1968

How are you doing? Did you manage to have the treatment? I can imagine how afraid you must have been with a high temperature.

The aches and pains are a real low, aren't they? Even though you know they're coming, it's still grim.

Trying to stay separate at home must be really hard, but it's important you both keep safe.

Sending love for a good night.

xx

 

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Re: December 2019 Chemo Starters

Hi rizzer

Thanks for asking. How are you doing? Sounds like you had the treatment if you were wide awake last night 🤪 How many more are there?

I had my sixth and last docetaxel on Monday and expected to feel relieved, tearful and euphoric, but it was very subdued given the current situation. For so long I'd imagined it and how I'd ring the bell for all it was worth, yet when it came to it, it felt wrong to celebrate.

The nurses said at the start they'd keep people a chair apart, but by the end of my session the bay was full. Maybe they were trying to keep only a few in use for hygiene, but it was bothering people that they were quite close. 

No-one was allowed in the waiting room or treatment bay, but I was glad to see a notice saying patients could be accompanied for their first session. I cannot think how distressing it would be to have to do the first round on one's own and under these circumstances.

I came home (after chips in the car before the chippy closed!) and there was a letter saying to isolate for 12 weeks. After having to isolate since early December for the purposes of chemo, it did feel ironic. 

The advice I've been given on that score is a bit vague as although I was an 'active chemo patient' when the list of vulnerable people was drawn up, I won't presumably be as vulnerable as those just starting out. 

So all week I've felt really odd about everything; incredibly relieved, but fearful of the next step (follow up appointment with the oncologist in twelve weeks, but no radiotherapy is needed, and as I'm TN, no hormone therapy either).

I suppose it's a kind of limbo, and it's not helped by the holiday feeling going on around, with the good weather and the papers full of bbq pictures! Does anyone else feel the same? I know people will struggle with keeping inside, but it's not a Bank Holiday!

Tonight I've got the filgrastim aches and pains, a sore, dry mouth and a sore vein ☹ Not to mention three interestingly purple-black toenails...but I've sat in the garden with my cat, finished my book, watched one of my favourite films, and whilst I can taste nothing, I do have the memory of Monday's chips to sustain me!!

Hope you sleep better tonight.

xx

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Re: December 2019 Chemo Starters

Mc22

I had dry nose and am getting lots of scanning and nosebleeds. My oncologist prescribed Bactroban which has really helped.

I have daily texts and have had a letter. They said to contact GP surgery if you haven't heard anything by Sunday x

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Re: December 2019 Chemo Starters

Mc22 stick nose over hot drink let steam go in then put Vaseline. I’ve had this se too and the weird nails brittle and toe nails grown really fast. All bald head now got furry growth. 😉

 

Not sure if this is a good sign or what. My chemos due on 7th April haven’t heard a thing feel scared to have to go to hospital also scared if it’s cancelled or delayed 😩

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Hi all.  Hope you are all coping under the circumstances....

Hi all.  Hope you are all coping under the circumstances. I had 3 hospital appts in the space of 5 days and was freaking out because of CV.  The first was radiotherapy consult and I phoned to ask if this could be done as phone or video.  They got back to me to say they were happy to put that appointment back as I have time (last chemo due Monday).  Had confirmation today that chemo going ahead and will be attending for bloods tomorrow.  I’ve got a bag with antiseptic wipes, cotton gloves and a mask.  I’m so worried about infection.  Also has anyone had their letter from NHS about 12 week isolation? can’t believe they don’t have my mobile number and I’ve heard nothing.  I also have to NHS app - you’d think they could put it on there. 

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Re: December 2019 Chemo Starters

Hi @Mc22 - Vaseline has definitely helped my nose!  It’s been very dry and “scabby” inside, bleeding every time I blow it.  I’ve also had a bit of a sore throat as I am having to breathe through my mouth most of the time.  I’ve been applying Vaseline after each time I blow and it’s certainly helped.

 

Lynne x

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Re: December 2019 Chemo Starters

Hi all.  Hope you are all coping under the circumstances. I had 3 hospital appts in the space of 5 days and was freaking out because of CV.  The first was radiotherapy consult and I phoned to ask if this could be done as phone or video.  They got back to me to say they were happy to put that appointment back as I have time (last chemo due Monday).  Had confirmation today that chemo going ahead and will be attending for bloods tomorrow.  I’ve got a bag with antiseptic wipes, cotton gloves and a mask.  I’m so worried about infection.  Also has anyone had their letter from NHS about 12 week isolation? can’t believe they don’t have my mobile number and I’ve heard nothing.  I also have to NHS app - you’d think they could put it on there. 

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Re: December 2019 Chemo Starters

I  too  am not sleepinwell Lady34. Thank you for your concern.

Quick question: does anyone have a remedy for dry nostril side effect? Would vaseline help? New to some of these SEs. Also soreness round my nails which I have never had before.

Mc22

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Re: December 2019 Chemo Starters

Hello - I'm what you might describe as the Ghost of Chemo Past, as i was part of the December 2012 chemo thread - we called ourselves the Christmas Crackers. It helped so much at the time to have this group of people there who were going through the same thing, and to whom you could talk honestly.

 

I'm fine now - touch wood - and it all seems a long time ago, but as the Coronavirus epidemic has been

escalating, I keep thinking that although it was hard enough to do chemo back then, how much harder it must be for those having chemo now with the general chaos and the added danger of the Coronavirus.

 

I just wanted to say you are all in my thoughts, and to send you the very best wishes for getting through your chemo safely, and with your sanity intact!

 

Caroline

 

 

 

 

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Re: December 2019 Chemo Starters

Afternoon all

mc22 sorry you and your husband are in this situation but as you quite rightly say there’s no option this applies to everything we are now having to juggle. 

If you all remember we were diagnosed in October or November and started what is a journey with possible life threatening outcomes. 

 

Yes we did this bravely cowardly or frozen we did it! Now us coming to terms with our own mortality has expanded into the entire world threatened with ......death

 

we have no option but to keep on with our individual journeys.  

 

The suns shining. The nhs are the most important people in society. I’m safe in my house living in unprecedented times. 

 

No wonder I’ve woken up several times in the night to check the news! Can’t switch my mind off for long. 

 

Sending huge hugs to all 

 

🙏🏽🌲🙏🏽🌲🙏🏽🌲

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Re: December 2019 Chemo Starters

hi rizzer.

 

Poor you, wide awake in the middle of the night 😬. 3 more for me. Ironically I have never been so happy to receive the poison.

 

B4

 

I have no words for the stupidity and selfishness of people. It really is criminal to tell lies like that to get what they want. It makes my blood boil.

 

Did anyone clap the NHS last night? It was so emotional. Our GP friends from across the road and their sons stood at the end of our path (about 6m away!) and joined us and our street clapping and rooting. It was quite emotional. I feel so grateful to have our wonderful NHS more than ever.

 

Take care, ladies  and have a good day x

 

 

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Re: December 2019 Chemo Starters

Dear Mc22

 

Im sorry that you are going through a very tough period, completely unimaginable. These are testing times, but believe me (you also know) it’s for your benefit, not going to be long and already 3 days are passed. 
please look after yourself. My best wishes and prayers are with you. Keep talking to us in the group.

😘😘

B4

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Re: December 2019 Chemo Starters

Mrs S,

I guess you are doing well, with regards to social distancing, so long as there is 2 m distance between people at home if the same area cannot be avoided. That’s what I’m doing as my hubby works in GP land.
The worse he has come across is, a few people who on tel triage don’t disclose about respiratory symptoms (??), it’s only when they come for face to face consultation that these symptoms become evident 😱

I wish there was more education and reassurance to prevent such behaviour.

 

Best wishes to all. Hope you are all coming to an end... 2 more for me. 
loads of love

B4

 

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Re: December 2019 Chemo Starters

Hi everyone,

Wishing I wasn’t wide awake..... 💤 

Take care Mc22 - I’m so sorry you and your husband are in this situation. Your nerves must be shredded. You can do this though ❤️
I’m wondering how you’re doing madcatlady?

Not heard from you in a couple of days, hope you’re ok? Xxx

 

 

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Re: December 2019 Chemo Starters

Yes, I know you are right Mrss1968. It's tough but don't think we have any option. I appreciate your comments so thanks.

Xxx

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Re: December 2019 Chemo Starters

It's not really possible unless he stays in one room and uses a separate bathroom. Our big area of cross usage is the kitchen, but he makes sure he is rigorously washing hands when he comes in and does it regularly. Doing our best but not completely isolated. You are both high risk. I would follow the advice you have been given. I know it's tough but safer for you both xxx

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Re: December 2019 Chemo Starters

Mrs 1968 - interested to know your husband is a doctor but you are managing to self isolate from each other in the house.

As you know my husband is just out of hospital and the doctors said he can't come home for 14 days with me being on chemo so he is staying at a remote holiday type cottage. The docs said he couldn't even stay with my daughter because he is now also high risk and she has young children. I am desperate to get him home because he is now frail himself. It is heartbreaking to not be there with him when he has just come out of hospital. I should be looking after him. This is all so unnatural. My daughter is nearby and talks to him through the glass of the patio door a couple of times a day  but I don't like him being by himself all night. He has a clot on the lung and is taking medication to disperse  it.

I was thinking whether it would be too risky to bring him home if he stays in one room. Do you think it is doable, based on your experience?

Mc22 xxx

 

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Re: December 2019 Chemo Starters

Rizzer I reckon we will all be on 5 instead of 15.

Back from paclitaxel. Three more to go 🤞🤞🤞

Stay safe and sane ladies. Mc22 hope your husband makes a good recovery x

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Re: December 2019 Chemo Starters

Thanks Mc22. I go lots of bone and joint pain with the injections.

This is more muscle and joint pain with the taxol. Slightly different for me between the two x

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Re: December 2019 Chemo Starters

Hi all,
Home now after paclitaxel. Had a tele-consult with oncologist. Livers, looks like my radiotherapy will also only be 5 sessions too. He said each one was a higher dose but that shouldn’t affect us in terms of side effects. He explained about the clinical trials (the results of which were due to be announced and I guess peer reviewed at some conference which now clearly isn’t happening) showing that there was no substantive difference between risk of recurrence on 5 days or 15. 
Im so glad about that especially with CV. 
How are you doing MrsS? 
Love to you and your husband mc22 and you Aurore ❤️ This is so tough Xxx

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Re: December 2019 Chemo Starters

Aurore,

I completely understand your fear and anxiety. If they have recommended you should continue with treatment for peace of mind ask what special measures are being taken to protect you when you go for chemo, bloods etc. You might feel better once you know how it will all work. 

I am TP and having adjuvant back up treatment but I have decided not to have the last two. I think they may have suggested that anyway.

Hubby and I are now having to self isolate separately as when he was dischaged from hospital they said he could not come home as I am on chemo. At the 11th hour a friend of my daughter offered her holiday cottage in my daughter's village. People are so kind. In 14 days he can come home and we can continue self isolating together . The good news was that he tested negative for the CV but they worry in case he may have picked up something in hospital.

Take care.

Mc22 xxx

 

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Re: December 2019 Chemo Starters

Hi @Mc22, I am being treated at the Bracknell cancer centre under the Reading Trust.  I must admit I didn’t ask the oncologist if the dose was stronger, but will ask at my planning apt on 3/4.

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Re: December 2019 Chemo Starters

Hello all

I do not write here very often but check in every day on how everyone is doing. Like everyone else it is very scary time. 
i am in London and currently neonadjuvant for triple negative. I am due paclitaxel/carbo 5 tomorrow (planned for 12). Had a call from oncologist who recommends for treatment to continue as she feels having the surgery now would not give me the best chance long term. She said that they will continue to deliver treatment (but I am sure they cannot guarantee this). But continuing treatment has also its own risk. It was hard to hear how cancer patients have been classified in categories to decide who will receive treatment. 
i know we are all being faced with difficult decisions who are being made for us.

What have you been advised so far? 
MC22 - I hope your husband is feeling better. 
i am sending love and strength to you all

aurore

ps: getting ready to go to unit for my bloods and pretty petrified 

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Re: December 2019 Chemo Starters

Thanks Rizzer

Part of me was worried it might have been CV, especially as my husband is a doctor. We are socially distancing in the house, separate bedrooms etc, but unless I lock myself in one room it's impossible to not cross paths, touch the same things etc. I also need to look after him ie cook meals etc. He has been brilliant, cooking meals when I'm knackered. He puts his clothes in the washing machine so I don't handle them. We are doing everything we can 🤞

I am more tired/ fatigued as this goes on.  I get the odd sharp pain but don't think it's nerve related. I have some tingling in my fingertips but no loss of sensation or function. My oncologist said peripheral neuropathy happens exponentially, so just keeping an eye on it.

Driving myself to and from chemo to avoid getting in the car with someone else. Will just have to wait for piriton to wear off. Fortunately it's only a 10 minute drive.

Good luck today. Will be thinking of you x

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Re: December 2019 Chemo Starters

Hey Fiona,

That raised temp must have been so worrying for all sorts of reasons. I’m so sorry.  Glad it’s back down. You still ok to go ahead today? Were you worried it might be CV? 

 

My aches aren’t good, but I wouldn’t say they’ve got progressively worse. I’m definitely very very tired now tho’. Had to sleep in the afternoon yesterday, which hasn’t been something I’ve been doing. How about you love? 


That worsening may be something to do with the fact you’ve had the weekly doses starting to build up?

 

My oncologist suggested reducing my dose after the electric shock type nerve pain I had, but I said I really didn’t want to. He said it could get worse and may leave permanent damage, but right now I’m just grateful for all they can get in me before they have to stop...


Thinking of you and sending lots of love Xxx