Hi all
Welcome @Chynadoll, @Mum2boys, @Jennet as everyone has said non of us really wanted to be here but we are a great team now, helping and supporting each other, I hope we can do the same for you too, any questions just ask and I'm sure someone will reply.
Well quick update for me, back from caravan on Monday went for bloods, got phone call Tuesday to say kidneys ok but to keep up the fluids as much as possible, infection rate down, so only problem was magnesium was still dropping, so I had to collect a prescription for magnesium chewable tabs which I have to take am/pm for the next 21 days. Had a face to face with my Onc today and have discussed keeping the added sickness tab, the extra steroids and trying immodium instead of loperamide and if that doesn't stop my gut problems I can try co-codomol so will see how the treatment goes tomorrow. Fingers crossed I manage this one better, I feel a lot more positive because I actually feel like my old self the last couple of days.
@Heels to walking boots - you mentioned surgery, I had my first surgery at the end of March, my tumor was just below my nipple and so my surgeon offered me a choice of lumpectomy with the removal of the nipple (though I do still have the areola) and SNLB at the same time or mastectomy, at the time my tumour was recorded at 1.2 mm which is why I was not given chemo first, so I opted for the lumpectomy, unfortunately after my surgery it turned my tumour was a lot bigger at 4.2mm and I had a 1.4mm macrotasteses in my sentinal node, so I then needed a second surgery to remove all my lymph nodes and had 2 further macrotasteses so had 3/15 positive nodes. In hindsight I wish had asked for a little time to consider things, but I thought it was a small tumour and unlikely to have spread so I went for the lumpectomy and nipple removal. My advice would be if you have any concerns talk it through with the surgeon and if you aren't quite sure maybe a day or so to think it over and talk it over with your hubbie, my hubbie wasn't able to be present with me, so I made my decisions without having talked them over as really I just wanted to get the tumour removed. I hope my comments to Jennet and Mum2boys may also be of use to you when it's time to make a decision, I too have photos and would be happy to share them with you if the site allows. I had my lumpectomy on the 22nd March came home the same day, had very little pain, the district nurse came to change my dressing and I did have to have a further dressing, I started my excercises as advised and was surprised at how easy they were to do. I had to go back for results on 7th April and was scheduled for second surgery (ANC) on 15th April I had to have a drain, so stayed in overnight, this was a harder surgery and had the drain removed by district nurse on 26th April but would agree that it took me longer to get over, my results appointment was 5 May so nearly three weeks after and was probably 4 weeks before I really felt completely over it. Thanks for the good wishes I am very positive that this treatment will be better this time around!.
@Louise65 Happy Birthday! I hope you had a lovely time with your family and you are managing to cope with the depleted energy and food and fluids. I would definitely recommend getting in touch with your team if you are still struggling, I had an extra sickness tab at the of my last session and my Onc has agreed I can carry taking it as my Cyclazine doesn't last quite long enough to take me through 24 hours.
@Trowster - hope you too are feeling better and the cream for your head has improved things for you. I find I need to eat small portions and often so end up with custard cream biscuits, I also find the alpro vanilla desserts quite nice they just slide down and rice pudding, basically really bland.
@Mum2boys - please don't be hard on yourself I too have carboplatin but with docetaxel and my first chemo literally wiped my entire gastric system out, I ended up in hospital, but the result has been that my team are really supportive, my dose was reduced by 20%, my steroids have been extended to over 5 days and my antisickness meds changed. Whilst my second treatment wasn't perfect it was so much better and I feel the more treatments I have the better they will get, so my advice is to contact your team as soon as your feel you are not coping and let them help you. Also last treatment I got very low and anxious over things I could not control, then after a comment form Sian (hopeful 1974) I remembered my Oncologist telling me that the steroids could affect me and I really think that was the case this time, so now I have been prescibed some diazapam and so am prepared if I feel my anxiety is getting out of control again.
@chynadoll - you have such a wonderful positive attitude I'm sorry I can't give you any advice on EC as I am not receiving that particular treatment, but I do hope you continue to get through your treatments, you are doing amazingly well.
@hopeful1974 – Sian you sound as if you are coping well again, you are always so supportive and helpful, I bet you are great at your job, but totally agree you shouldn't consider working until your immune system is able to cope again.
@Jennet – as I wrote to Mum2boys I've had my surgeries and was told if I had chosen mastectomy I would have had to wait for a reconstruction so think that too may have affected my decision at the time, though now I feel that would not have been a problem had I gone down that route. I now have one breast nippless and much smaller than I thought and so will probably try a prosthesis, but also have to had radiotherapy which may well change my shape/size further. My radiotherapy will be in November I think and as I'm having trastazumab and perjeta treatment which will continue until around June next year, I still have a fair way to go.
@JessicaB I'm so sorry to hear of your problems with your MIL, when you live a distance away it is difficult enough and with the current situation it must be making your life so much harder and you really do not need the stress at this moment in time. Good luck with your Chemo tomorrow, I hope you manage to use the cold cap and slow the loss. I'm glad you are managing to find some pleasure in your garden, I have been out giving my front garden some much needed tlc this week, I had beautiful lavender in a pot, which my hubbie unfortunately had been forgetting to water when he did my others and its taken a bit of a battering, but I 'm hoping I can manage to revive it.
@GonnaGetThruThis So pleased that your genetic results were good, I too worried about passing a gene on to my daughter but the surgeon reassured me that mine was age related and not genetic, I'm 62, sorry can't help out with menstruel issues for this reason obviously. I hope you all have a lovely day celebrating with your daughter.
As this has been such a long post, I won't names everyone in the group but I do hope you are all staying well and I'm sending your all positive vibes, big hugs and much love
Yvonne xxx
