After being diagnosed on 18th January and going through all the various test, I finally get to see the oncologist tomorrow. Would like to hear from anyone who has any suggestions about what questions would be good to ask.
Also what are your experiences of how long it took for treatment to start after first oncology appointment. As my breast cancer is grade 3 and fast growing, I'm worried about it spreading, before my treatment even gets started.
Was it suggested you have a PICC line or port?
Hi everyone,
NGS so glad they've offered to reduce your dose, that sounds like a good plan. Really hope you can avoid any complications with these next two rounds. Keeping everything crossed the lower dose is better...and also very glad that the injections have been reduced, hopefully that will help a lot with the bone pain. Gosh it's all so horrd sometimes isn't it? Good news on no radiotherapy though...keep us posted on operation dates etc.
I'm doing ok. This round has defiitely felt tougher than the previous rounds....all the symptons are manageable just not nice!...nausea, fatigue, bone pain, diarrohea, bad sleep, horrid taste in my mouth...I had a bit of a panic with the cold cap on Tuesday and felt really claustophobic and started to feel sick with the cyclophosphamide and i think the room was quite warm so the day of chemo was just a really long hard day...and then the nausea after has been not very nice...but like i said all manageable and i've still made it out for walks, picked kids up frorn school, made dinners etc it's just felt a bit tough!...i've also put on about a stone of weight since starting chemo which is getting me down a bit....why does your body crave carbs and stodge when really what it needs is nutricioius food!...i forced myself to make a ramen today though so lots of healthy stuff in there, lots of garlic and ginger and veggies..just need to get to good stuff in, even if all i want is carbs and plain food!!!!
Anyway i can't really complain, i've only got 2 more to go!!....so i am grateful for that! i really don't want to do the cold cap again but it's hard as i've done 4 already so seems a bit silly to fall at the last hurdle for the final 2!!...then it will be to radiotherapy...my oncologist is going to refer me to the radiology department, he said it would be minimum 2 weeks but could be up to 4 weeks...we'll see! Then will be injections and hormone drugs for the next however long!...they even mentioned getting my ovaries removed at some point....we will see!!
Pippin - hope you're enjoying a good few days.Good luck on Tuesday, hope you don't suffer too much with side effects. Glad you've got the go ahead. Interesting about the dentist, for some reason my dentist has managed to cross me off their system and they're not taking any more NHS patients...so not sure what i do about that!!..i know all this treatment we're having can affect your teeth so a bit of a worry!
Anyway i hope you're all having a lovely bank holiday and finding some nice positive moments in amongst all of this!
xx
Hi Greeny80, sorry to hear you have had a tougher time this cycle. It does seem that you have suffered quite a few side effects, even though manageable. Won't be long before you get to the radiology part of your treatment, would be good if it's only for two weeks. I've been doing well, apart from being a lot more tired this time. I too had been struggling with weight issues. I wanted to weigh in at slimming world this week, so made a big effort over the week to sort it out. Was really happy to weigh in within my target! Hope you enjoy the rest of the bank holiday weekend. Xx
Hi NGS, I just realised I didn't mention your amazing upcoming news, hopefully you won't have too long to wait. You must be so excited waiting for the arrival of a beautiful granddaughter. Enjoy every minute, they are so precious. Xx
Morning ladies
good luck today Pippin. Hope treatment goes well for you
I’m a little apprehensive but hope all the adjustments pay off this time
my positive thought for you has been that 3 weeks today will be my last chemo. Wow that sounds good
Greeny - sorry to hear your having more symptoms. But good to hear you are finding ways to manage. I like you find the weight gain frustrating. I think I had it in my head I would lose weight on chemo. Oh well another thing to tackle after all of this
I had my ovaries removed 12 years ago - best decision ever.
im not sure what stage of life you are at but with little children I’m guessing a bit younger than me. I was 41 when I had the op and whilst it sent me into immediate menopause I now have none of the menopausal symptoms my friends experience at this stage of life.
the only difficulty for me has been the arthritis in my hips but that could me a combination of surgery and taking tamoxifen for 5 years. I have never taken HRT due to my high cancer risk.
positive vibes everyone on the sunny Tuesday morning.
oh he no baby yet - due date was yesterday
xxx
Hi NGS, good luck with everything today, fingers crossed all will be well now changes are in place. Treatment five for me today, with two more to go. Last treatment for me is 9th July, which happens to be our 41st wedding anniversary.
I also thought I would lose weight during chemo, but it seems to be the opposite. I seem to get hungry all the time when on the steroids, not sure if it's in my head and just an excuse to snack.
I slept better last night after taking the double dose steroids. I explained the problem l had last time, during my telephone review. It was suggested I take them earlier, so I now take first dose at 7am and second dose at 12 o'clock. This really seemed to help, which is a relief.
Keep us updated on any baby news
Greeny80, hope you are starting to feel better, I know you found this cycle more difficult. Have you tried asking your care team about dentist situation? They may be able to offer you some advice on the situation and perhaps might know who are taking patients.
To everyone else I hope you are all OK and doing well. Xx
Morning ladies!!
Good luck today Pippin - amazing after this only 2 more to go! YAY! Hope you get on ok this round. Sending all the positive vibes your way.....and also congrats on nearly 41 years! Amazing!!! My husband and I will be 15 this year in September...hope we are just as happy at 41 years!!
Yes i'm definitley snacking more and exercising less so hoping once the chemo is done and i start to feel better i can concentrate on feeling strong, healthy , fit and well again. My taste and mouth and just feeling a bit icky is just weirdly making me want to eat?? I thought it would be the other way around as everythig tastes weird but sadly not the case...but i'm trying not to worry about that too much although i'd be lying if i said it wasn't getting me down at times but i just have to put that to the back of my head at least until i'm finished chemo.... then we'll see. Although am slightly worried about the tamoxifen/AI's/Jabs etc making weight loss harder but guess we'll cross that bridge at a later date!
Definitely starting to feel better. I had my last jab yesterday so bones were a little sore, didn't have the best sleep and have woken up with a bit of a stuffy nose etc but i think i had that last time for a day as well so might just be a weird side effect which hopefully won't stay around too long...THEN i can enjoy 2 weeks of feeling good!! We hope!!!!! Next one on the 11th June...but my parents are actually coming to stay for a couple of nights next week and coming to see my kids sports day too so that will be lovely! My kids are 13 and 10...oh and i think NGS asked how old i am, i turned 44 in March I had my diagnosis in December so was 43. They have talked about ovary removal but when first suggested they said after the 10 years of hormone drugs etc? Need to chat to my oncologist again...I'm all up for taking them out if it helps and i know i'm lucky that i've had my kids etc...i know many aren't as lucky.
Keep us posted on happy baby news! Ah so exciting! NGS so glad you'll be done so soon too! 3 weeks to go, that's VERY exciting!!!!!! So have you got a cycle today too? Hope the new dose works its magic and no complications or additional hospital visits this time.
Pippin let us know how you go today but hope it's all manageable and that you still get out for your walks!...talking of which i'm just off to take the dog out now before the rain!....so will touch base again later!
Lots of love ladies!
xx
Good morning all. I hope you're all well.
Good luck today Pippin24 . I envy you a good night's sleep. I can't remember the last time I had one of those lol. And congratulations on 41 year anniversary, that's amazing!
My surgery site is healing well and I'm feeling really good. I'll make the most of that feeling as I restart immunotherapy on the 6th June. I have 5 sessions of immunotherapy to get through (including the one next week). I am also awaiting a referral for radiotherapy. I saw my consultant on Friday and he wants me to start taking Ibantronic Acid once I've had a dental check-up (also, reading the radiotherapy pamphlet, I might wait until that's over too so I can manage and monitor any side effects). You are all very wise ladies, so may already know, but Ibantronic Acid is usually prescribed for osteoporosis, but they have discovered that it also works well to prevent breast cancer returning or spreading to the bones. The side effects sound a bit daunting, but am hoping that I'll be ok, despite being a side effect magnet! I guess worse case scenario, I stop taking them and take my chances ... Have any of you been taking these?
NGS so glad they reduced your dose. Has it helped at all? That was an option they gave me before stopping docetaxel altogether. I think I've been an oncologist nightmare so far lol.
I do have a small seroma under my left arm, but the surgeon doesn't seem concerned. Just need to keep up with the exercises (which on writing this, I've realised I forgot to do this morning!) and he is confident it will disburse and be absorbed by the body naturally.
Ok, I'm off to do those exercises before I forget!!
Love to all.
Carol xx
Hi Greeny80, all went really smoothly today, they accessed my port first time. Also had the phesgo injection which was fine too. Got to the hospital at 12.30pm and was home by 3.20pm, quickest so far. Now have my appointment for echocardiogram on the 12th of June, so another appointment to add to the list.
A lovely girl of 14 years old came around at the hospital with her mum who is a cancer patient, to give out free goody bags to cancer patients. Her aunt who previously had cancer was given one during her treatment and it gave her a real boost. So this young girl decided to make these bags up herself, with donated products and bring them round the chemo unit. Lot of lovely items in the bag, including refillable water bottle, puzzle book and pen, hand cream, mouthwash, aloe vera gel, socks. Such a lovely thing to do and was so nice to receive.
Pleased to hear that you're starting to feel better and that you can enjoy the time before your next treatment. How long does the taste thing last for you? Mine seemed to only be for about 3 days last time. I'm hoping that's all it will be this time. How lovely that your parents are coming for a visit. I'm sure your children are delighted to have their grandparents coming to watch their sports day. It's good to hear that they're thinking ahead about ovary removal, even if it is a long way off. It gives you plenty of time to think about it. I too am going to be on hormone blockers long term and bone infusions for 3 years. I wonder too if these will have an effect on my weight, will just have to wait and see. Congratulations to you too on your 15th anniversary this year, that is wonderful. Xx
Hi Carol, all went well at the hospital today, appointment was 12.30pm and I was home by 3.20pm, quickest so far. Got given a lovely free goody bag from a teenage girl, who makes them up from donated items. It is such a lovely thing to do and was so nice to receive.
It's good to hear that you healing well since your surgery and that you are feeling good. I will be starting bone infusions in August, which was a surprise as hadn't been informed of this before. They said it would be Zoledronic acid, so not sure if this is similar to what you are having. I've also been told to visit the dentist prior to treatment starting. Nothing has been said to me about immunotherapy though. Do you know why you need to have this? Did they give you any idea how long it will be before you start the radiotherapy? Hopefully your sseroma under your arm will disperse on it's own like they said. Just keep going with those exercises xx
Hey Pippin,
Ah funnily enough was just thinking about you!...so glad all went well today and that it was super speedy! Amazing....and what's also amazing is this young girl doing incredible things for cancer patients. What a lovely human being...such a gorgeous thing to do and i bet gave you all such a boost. Love hearing stories like this, so hearthwarming and makes you realise how much love and good there is in the world..especially when the news can be heavy. So yes a very welcome lovely thing to read.
So glad it went well and really hope minimal side effects. My taste is still very off - it's coming back at bit but we're on day 8 now...it never fully comes back but it definitley lifts a little.
Glad you've got a date for the echo cardiogram too.
Yes it will be lovely for my kids and for my parents to be there for sports day. It will spur them on i'm sure! Hope you continue to feel good! Have a lovely, relaxing evening and will touch base again soon...but yay to ticking off another one!!!!
xx
