Breast Cancer Now Forum

Oh my goodness i dont believe it! Ive just deleted the message i had just written to you!!!! Again!!!! I think i had done that in reply to your last message.. well here goes for attempt number 3!! Hope your feeling okay and your mouth is feeling better and not so sore. How are you getting on with the metformin tablets? I wasn't given that option they just put me straight on the insulin. Its not so bad i just inject myself every morning once a day and it seems to  be keeping my glucose levels at the correct levels. Although on the odd occasion when i know my levels are low i just have a little treat which is just lovely. The level soon goes down which is good.  Hope you get on okay with your ct scan tomorrow,  my fingers are crossed tight for you. I've got my next one first week in July.  The Danusumab injection i have,  alongside the hormone injections are for my osteoporosis which is a nuisance but it apparently helps the bones. Ive got a sigmoidoscopy tomorrow morning, although my dr didnt seem too worried about it and thinks its the internal haemorrhoids..always seems something else that crops up. Good news is we have now done some bookings for our Scotland trip in our motorhome, I'm so looking forward to it, we go on Saturday 3rd june and probably come back around the 20th ish. I might send this to you now before i loose it again. Keep well and i will speak to you again soon.  Love Marje xxx ... View more

Sorry I haven't been in touch, the week seemed so busy especially in the garden. Had my youngest grandaughter Evie staying since Friday,  shes 11. Shes lovely and is so quiet. It was good for her to get away from her sister Violet who's a bossy 13 year old, or tries to be bossy with Evie haha. Doesnt work! She wanted to learn knitting and crochet but it was so hard to teach her as shes got the concentration of a gnat!!  The nutrition sounds interesting and I'd love some info if you have any. Might be better to send it to my email address.  Funny you mentioned about feeling cold as I do! Roll on warmer weather! Got my glasses and its great now i can see distance a lot better. I'm sure its the medication thats doing that as well.  Had my hormone injections and the Dansumab inj on Thursday so my bloods must have been okay. Did you have yours? Trouble is they are having trouble finding a vein now for the bloods, I dread the ct's.  I expect your having the same problem. Had a bit of a problem with rushing for the loo last couple of days but hopefully the loperamide will help. Thought i had got away with that! Ah well feel fine other wise.  We didnt fet to the camping show as my son Matt came over with his girl friend Laura. We have a motorhome,  had for 4 years now and just love it to get away. Although the site fees have gone up in price hugely since the pandemic..stupid prices some of them. We were going to to get away this week but the weather isnt looking good at all! Such a shame hopefully next week will be better.  Although we havent planned where yet! As we live slap bang in the middle of the country , we could go anywhere!  Must go , got a call speak soon love Marje ... View more

Me and Raven, trying this out to see if ir works.  ... View more

Hi Dee, where on earth did that week go!! I hope your IBS is settling down, its such a nuisance. I have suffered with diverticulitis, same thing, for a few years but weirdly, touch wood I haven't had it since i started these tablets!! I really thought that would be one of the problems i would have. It is just the glucose levels. I increased my insulin this week by 2 units and that seems to have bought my levels down. Its worse when i have eaten my dinner. I suppose its a bigger meal aswell. Looking at what food has in it is a bit of a nuisance now.  Sickness has disappeared thank goodness. I realise now what really caused it..stupid me! I had 2 pots of cream in the fridge and opened the wrong one..slightly out of date! So i think thats what it was. My own fault. Went to specsavers yesterday so ive new glasses to collect in a couple of weeks 😅 !! That will do the trick !! I take my tablets in the morning when i have some breakfast and that seems to agree with me.  Kitchen is all finished and I'm just so pleased with it. Just how we planned it. Its a small kitchen and i seemed to do a lot of walking about but now its just great! I'd send a picture but dont think you can on this site. It will be nice now to just enjoy it now..apart from thinking what to cook to eat haha. I didnt realise that chicken was high in oestrogen! I was never told that. Have you heard from anyone else on this drug we are on? I haven't.  Its been nice here today, just hope it will keep nice now for a while. We might go to Peterborough tomorrow as there is a camping and caravan show on this weekend so it woyld be nice to go for a change.  I'd better go now and sort out some dinner...and gaze at my kitchen again. My 2 boys are probably thinking I have lost the plot..I know my oldest grandaughter Tasha does! Spoke to her on zoom this morning, i never even noticed she had changed her hair colour from blond with pink ends to dark brown!! Looked nice anyway. These 17 year olds haha.  Speak soon love Marje. X     ... View more

Hi Dee hope you had a good Easter. We had my youngest son Matt over with his family 3 kids and a dog so it was interesting cooking out of the air fryer! 😄 🤣 The weather was okay as well. Kitchen is nearly finished and all the appliances will be in today, then the worktop on Monday..hurrah!!! Me and Gary spent last weekend painting the kitchen and dining room ..well Gary did most of it!  My ct scan is every 3 months so this last one was roughly 2 months after i started Piqray. Do you know when your having a ct scan? Hope your coping alright with the treatment.  I am doing okay with it just have to watch the carbs! If the levels go up a bit high then i know what is doing it and it does seem to go down quite quickly. I did feel a bit queasy last couple of days so not quite sure what that was all about. I'm just about to have a cup of coffee and some breakfast now so I'll speak soon. Have a good weekend. Marje x ... View more

Hi Dee, sounds like your doing well, thats good to hear. I had my appt yesterday at the hospital and my CT scan showed everything was stable and my cancer markers had gone down since being on Piqray! So i was happy with that! My bloods were good and also although Im now on the insulin my glucose levels have stablised and been lower so they were pleased with me. Had the 2 injections as well. That was my 3rd time of them.  I know Eastbourne! I was born there and lived till i was 5 then moved to Aylesbury. We went back a lot as my Auntie and Uncle lived there. I am still in regular contact with a good friend Heather she lived opposite to us in Hampdon Park. She now lives in Portslade with her husband.  We last went back about 3 years ago to my cousin to stay they now live in Hastings. I always think of Eastbourne with fond memories.  Kitchen is coming along good but Im getting a bit frustrated but at least we have a conservatory which we are using as a temporary kitchen! Novelty has really worn off now! Should be finished week after next on the Tuesday hopefully!!  Anyway im off now, might go to bed with my book haha.  happy easter Marje xx ... View more

Good morning Dee How did you get on with the injections? I have mine tomorrow 🤪. I have had 6 covid inj so far not quite sure when i can have the next one as i was due on the day i got covid! So that scuppered that for a bit. I bet that was horrible to break your leg as well what a pain so to speak. We aren't doing much over Easter except collecting our dog Raven from my sister's. They have had her just for the start of our kitchen demolition. I think shes been having a great time. My sister Sue is married to Gary's brother and their dog is the sister of ours. They live about an hour away. We've been married 49 years this year..my goodness! Scary all those years,and we have 2 lovely sons and 4 grandchildren, its a shame they all live quite some distance but we are all in touch very regularly. We've got a motorhome and its just great to get away in it, we tend to relax and forget everything thats going on and hopefully we shall get to Scotland in it this summer..well thats the plan. I'm just keeping my fingers crossed that i can stay on this Piqray for some time as like you Ive had a few other treatments which seemed to work for a bit then suddenly something else pops up which throws you back abit. And yes its always in the back of your mind, although I love gardening and I paint watercolours and can loose myself! I remember once i forgot to collect the boys from school once oh dear! Well I had better put the kettle on for these workmen..never made so much tea!! I'd be in the loo all day if that was me. Speak soon and have a lovely Easter Marje xx   ... View more

Hi Dee Covid didn't last long as they put me straight on the antiviral meds which kicked in really quick, although it was just like a really heavy head cold for about a week after but i was okay. I had some diarrhoea for a couple of days at the start but that eased off. I have my fluvestrant injections this week aswell on Thursday, what a joy to look forward to haha.  sorry to hear you have mobility issues i expect that can be frustrating for you. We thats me and Gary (who has been brillant all these years!) and our black Lab called Raven go out everyday for walks, although my energy levels aren't as much as it was! Still its a good excuse to stop a lot.  Had my scan but they tried 4 times to get the cannula in and failed miserably but did it without contrast so we shall see if the images are good enough for my consultant..hope they are as my veins are pretty rubbish now, and ive got lymphadema in my other arm..never mind there are worse things.  How long have you had cancer ? If you dont mind me asking. If you dont want to say then please dont worry about it.  I had breast c first 28 years ago then again 17 years ago with mastectomy and treatment, then thinking all was fine till 3 years ago and it reappeared and went to my hip so i had a replacement. And now ive nodules in my lungs,liver and bit in my spine. So hence the gene marker making it possible for this new drug. But otherwise im fine 😂😆. Got to keep smiling and positive.  Speak soon, just got to tidy up a bit as we have the builders in refitting our kitchen..blimey why did i think this was a good idea haha..be lovely when its finished. Marje x   ... View more

Hi Dee, good to hear from you again. I live in Rushden, Northants.  So a quite a way away unfortunately.  I started this Piqray beginning Feb but had it stopped for a week about 1 week after starting it. Then again for a week as i caught Covid!! I think in hindsight when introducing this drug they need to have a diabetes team involved right at the beginning. I have been reading quite a bit about it and diabetes is a high side effect with most people. It is drug induced diabetes so if I come off it for any reason then the glucose levels will go back to normal. I've been given a sensor which fixes on my arm so much easier than pricking a finger to test. (Libralight) I think its called.  I have low carb crispbread instead of bread and i have found Warburton low sugar wholemeal bread..but I'm still looking at stuff! Potaoes ive really cut down almost without. Its hard but I just want to try this new drug for as long as i can. Anyway good luck with it and take care. it will be interesting to hear how you get on. Marje x ... View more

Hi Dee, It is really good to hear from you as I am the same that I haven't had anyone to share the experience with. My glucose went up overnight just the same as you it did keep going up and got to 14 so my consultant got a bit twitchy and stopped the Piqray for a week while I was referred to a diabetic specialist nurse who then started me on 8units of humulin1 insulin. It bought the glucose down a bit but still keep rising so it was increased twice more and now I am on 12 units. at the moment the glucose has been running average of 8-9. It does rise when I have eaten something with higher carbs like my main meal about 6.00pm. So I am watching my carbs and the sugar intake. Bit of a palaver as Ive never done this before. So its mainly bread and pototatoes i have virtually cut out. So far so good! And i walk our dog every day as that apparently helps. I have been taking the antihistamines every day as well as like you i don't want any rashes. Otherwise I feel very well apart from getting tired. And i have found pains in my back have disappeared so bonus! I have my first CT scan on friday since starting the Piqray so i should hear next week if it is keeping it all stable! Fingers crossed!! Look after yourself and i look forward to hearing from you again.  Marje x ... View more

Hi Timmycat I have just sent a private message to you as well. I have been on this treatment since beginning of February as my consultant was keen for my to have it. The only side effects i am having has been increased levels of glucose so i am on daily insulin. That seems to be controlled at the moment. I actually feel so much better in my self, pains have virtually gone I just still get tired but i can cope with that. Let me know how you get on.  ... View more

Thankyou Julie for replying. I managed to get hold of a diabetic nurse this afternoon and will increase the dose of insulin tomorrow as my levels had gone up again today, so hopefully it can be controlled with increases of insulin. It does seem to be high risk of happening with this drug.  I don't want to have the Alpelisip stopped again just yet, just want to give it a try as 3 other treatments have stopped working. Hope your getting on with Capecitabine, thats one I tried but it only lasted 2 days as i unfortunately had heart spasms and had to get it stopped, apparently a very rare occurrence! Good luck with your treatment  Marje   ... View more

Hi I've just recently started this drug and the injectons and after 4 weeks developed diabetes and this weekend started insulin to lower the glucose levels,. I was just interested to see how you are coping as I don't know of anyone else in my area that is on this particular drug regime.   ... View more