February 2024 chemo starters

@salbert Who told you that? I don’t think we need that kind of negativity in our lives… :joy:

I know, right? It put me into such a paroxysm of fear that I had to go and snaffle a pack of Marmite crisps. NEVER TAKE AWAY MY POTATOES! :flushed:

Oh, oh and get this! It was the same person who told me to stay off alcohol for good. Worse thing is that it’s my boss who survived Stage 3 lung cancer across the stem of his lungs so I can’t very well say “What are you talking about? Shut up!”

I’m not sure if a life without potatoes (or other carbs) is worth living :joy:

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:rofl::rofl::rofl: life without alcohol or carbs?? What else is left?? I’m really looking forward to alcohol and sushi :yum: once chemo is done.

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Im living off carbs at the moment, my insides cannot take vegetables and fruit! Im looking forward to a nice chilled rose when chemo finished.

For you guys who hsve come tp end or nearing end of trreatment how quickly does normal taste and enjoyment of food come back? Im hoping to book a nice specisl meal out but dont want to book too soon in case the deliciousness is wasted on me and dont want to overload gastric system too soon. Any thoughts?

Hi @taniak me too can’t wait to have sushi again! I have had fish pie for dinner, shame It tasted like cardboard except the mash part. Never eaten so many potatoes in my life when I think about it!

Hi @salbert guess what my oncologist was only 2 hours 30 late, turning up at 7:30 instead of 5pm. She literaly read my MRI results and rushed. On a positive note my tumors have reduced by a third! all she was interested in was reconstruction. Still have 6 paclitaxel left to do and not seeing my surgeon until 30 July which was booked yesterday only. Too early for me to think about that tbh.

Anyway not much time to ask anything she was keen to go. Feeling a bit upset but I will hopefully get a better oncologist soon, even if that means changing hospitals.

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I have just been told that within 2 weeks to a month our taste buds will be back to normal. I do hope so. Pleeeease. @naughty_boob when did your sense of taste return? (She knows everything!)

@marionse25 That’s just not on. Routinely being hours late cannot be right. I’m really pleased to hear your tumours have reduced. That IS good news. I pray you get a new oncologist as it will make all the difference to your mental health. Switching teams totally transformed the way I felt.

I’m having chemo no. 13 in about an hour. Time to snarf down my lunch. It’s so healthy that I cannot bring myself to tell you all about it for fear of ostracising myself


. Instead I will post a pic here of my beautiful roasties from last night which I photographed for you all, and ask you in what world it would be possible to say “No thanks, I’ll pass on those lovely little devils”. Fear not …it shall never happen.

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Morning all, hope that you are all doing ok.
Back to the unit this morning for my first Zoledronic infusion, its going to be strange to sit in that chair again ! Have been told that I might feel like I have the flu for 24/48 hours but hoping that it is closer to 24 hours as I am getting my port removed on Monday. Another step onwards. X

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Thanks for the she knows everything, I wish!

But my taste buds took about a month to come back. There are some things I can’t stand to eat or drink, they smell or taste is revolting. I stopped drinking red wine after 2 weeks of chemo as it tasted and smelled disgusting, I still haven’t touch a drop since.

But everyone is different. You’ll just have to wait and see.:smiling_face_with_three_hearts:

Welcome to all the new participants. So sorry you’re part of our club but glad you’re joining in.

Makes me angry to hear of unsupportive oncologists. Everyone is busy but patient care is a huge part of the job and for some it is a relationship which will last several years with hormone treatment.

@shonas how were the days after the zoledronic acid?
I had mine just over a week ago. I had the bone pain in my legs but as long as I walked or stood it was fine but I was also tired so I couldn’t walk all day!
No flu like symptoms at all and the pain was gone after the first 24 hours though my spine needed a couple of days to cooperate in yoga and pilates.

My taste buds were never too much of an issue during chemo. Yes, slightly blunted but I could still enjoy most things so it’s hard to say exactly how long it took. I’d say probably till the end of my usual 2 week chemo cycle at the end.

My twins finished their GCSEs today so we’re off to Spain for a few days on Tuesday. What a year we’ve all had already and yet I hear there’s still another 6 months to go :sweat_smile:

I hope everyone has a calm weekend without too many side-effects xx

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@healing24 day 1 after the Zoledronic infusion had some muscle/bone pain but not too bad. Had a few shivers and was pretty tired. Its now day 2 and feeling ok. Just need to get my a**e in gear and get out for a walk.

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So this happened today, hope its ok to post, i know some of you are still having chemo. iv got radiotherapy, targeted therapy and hormone treatments to go but feel a huge relief this part is done :heavy_check_mark:. My emotions are all over the place tonight, wasn’t expecting that.

Hope everyone doing ok and side effects not too bad. I may not have posted often but iv read the whole thread. thank you for sharing your experiences as it really does help to know other people are going through the same thing. :heart::heart:

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Fantastic news @jcovi and a huge milestone reached on this ever changing journey we’re all on.

Hope you’re celebrating :partying_face: tonight? Having said that my Champagne is still in the fridge - I’m making sure my taste buds are back on track before I waste a drop of that pink fizz :joy:.

Well done on getting through chemo and best of luck with whatever is next in your treatment plan.

I’m seeing oncologist tomorrow so will find out what’s next for me but I think it’s going to be radiotherapy first.

Xx

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Thanks so much @kitty77 :heart:. My champagne is staying on ice too, until i can’t taste it again!

Good luck with your oncologist tomorrow
xxx

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@jcovi CONGRATULATIONS!!! :partying_face: So happy for you. I’m hoping to be in the same boat come Thursday evening. I’ll be so gutted if I get a delay right at the last. That makes me so happy to see your sign. Thanks for sharing, it has made me smile.

@kitty77 I have my fizz ready but maybe I will wait until my liver has had a little break and I can actually taste the stuff too!

Have a great weekend, all.

Salbert
x

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Hi Everyone,

I hope you are all doing ok.

Just had my 9th paclitaxel which was about to be delayed due to AlT at 140 although my dose has been reduced. My terrible onco was contacted and said it was fine to proceed as my etes were bot yellow! She was not wven there and the nurses waited a while to get hold of her. I stayes until 6pm as a result and now praying I don’t end up in A&E tomorrow. This is what happened with my 2nd paclitaxel where ALT was 146.

3 more to go and I will have done my 20 weeks of chemo. Phesgo again next week which I hate. Hate even more the idea of switching to Kadcyla after surgery. Apparently there is a high chance. It is chemo infusion for 1 year, anyone told they would have it?

I have asked to change oncologists and believe me Royal Marsden is not as good as what people think. You would bot believe it If I tell you the full story. The 2nd opinion from the London Clinic was great and I may have a think about moving there after surgery. Moving now so close to the end of chemo could delay my treatment and surgery so not really worth it.

Still waiting for an appointment with Dr Power @salbert not sure how quickly your first meeting with him was as he is your surgeon too?
I am supposed to have surgery end of August so not much time to decide about reconstruction. Also waiting for genetic testing to be arranged but the genetics consultant is on holiday for a while… I am geeting quite anxious to be honest.

Otherwise i really feel the cumulative effect and the iron infusion I had last week has bot had any effect yet. I have shooting pains in the legs and feet and everything tastes bitter and awful. Even pineapple which my staple during EC. Inwas hoping I would lose weight but nope!

Back to work tomorrow, nurses are amazed I am still working full-time except chemo days, I am now wondering if I would have coped without work as a distraction.

I hope you all have a good week, minimum side effects and you can enjoy Summer. Can’t believe it is July!

Big hugs

Marion

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@marionse25 I’m having phesgo until surgery but my surgeon mentioned that I might be switched to kadcyla post surgery. I really don’t want to have to go back to infusions though if I can avoid it. For the moment though I’m just concentrating on recovering from my last dose of chemo and getting ready for surgery on the 29/7. I decided to switch teams after my last chemo since I didn’t feel hugely confident with the team at the RBH for the surgery/ongoing care, so it’s been rather frantic getting everything sorted so that I can have my surgery within their guidance windows.

@marionse25 As you know, I changed teams too. It sounds like you are having a very traumatic and stressful time of it with an oncologist who is impossible to pin down.

Dr Power was a bit of a wait as I remember, but it was done so far in advance of me needing him that it wasn’t a problem for me. Katherine Krupa is my surgeon and I cannot sing her praises enough. It was she who brought on Kieran Power for the reconstruction.

The iron transfusion takes a bit longer to kick in but you should feel the benefits soon.

Hang in there, Marion. You are almost through the chemo.

Sending love and hugs,

Salbert
x

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Hi @salbert

Thank you for your lovely message. You have been such a great support since I joined the forum! I wish I was as positive and bubbly as you!

I am meeting my new onco tomorrow at RM Sutton, and will then see him in Cavendish. My terrible onco asked her PA to send me a note to say sorry I was not happy. She thinks my main concern was the remote appointments!!! I was supposed to see her tomorrow but she cancelled my appointment. My plan was to give her some constructive feedback but she does not seem to be interested. Anyway I need to move on. I am telling myself my new onco can’t be worse!

Otherwise I am still waiting to hear about my genetic tests that have to be arranged, and no news from Dr Power either. As I am under RM Chelsea it seems everything is very slow and disorganised. Sutton seems better, shame it is a headache by public transport.

I am finishing chemo on 22 July and it is a bit worrying that surgery was not planned/discussed ahead as I am supposed to have surgery end of August. I am going to Future Dreams next week, they have their monthly surgery event where I will be able to get some advice and shared experience on options.

As it stands I am a bit lost, I don’t want a DIEP and was told by my breast surgeon I could have immediate reconstruction with implant with a tiny risk of lymphoma cancer, and complications with the radiotherapy I will have afterwards…No mention of the option you have been offered but maybe it is not an option for me who knows.

I hope your last chemo goes well

Big hugs,

Marion

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