Starting chemo October 14

[Junash]

Actually back to BC matters. I originally asked about having my overies out as I was 8/8 on oestrogen positive - onc didn't really answer. Am seeing him mid-Feb so will mention again. I was pre-menopausal before chemo.

Nicnac - great pains have subsided - hate these weird aches etc.

[Junash]

My fave subject travel - Very true - we dragged sam around Vietnam / Thailand aged 4 - he was fine. Took him to Hong Kong interesting - lots to see, island hopping, nice beaches and there is a Disney if you're taking little kids. Haven't done a safari yet but it's on the bucket list. I really want to see the aurora borealis. Maybe I should put this on the FB page xx

[jingo_x]

Just drag the kids too! My oldest two did their first safari age 4 and 6 - they slept through most of it 🙂

Glad your stomach is feeling better NicNac

I spent today trying to find out why I am having a bone scan - still none the wiser so I am going to postpone it until after next month's oncology appointment I think.

[nicnac15]

Evening everyone,
Stomach gone not had any problems such since Wednesday so that positive. Just hope scan shows nothing feel like I'm sort of getting back to my old self but then a hospital app puts me back with doubts.
When I asked about taking ovaries out as i was worried about the oestrogen in my body she said they look at family history and age and that the tamoxifen will be blocking some of it, my bc was hormone positive also.
As for holidays jingo we've been looking into florida in august I've always wanted to take my kids and I look at life so different now, my husband wants to book a ski holiday for Feb 2017 as it's what we use to do before having the kids. Your holiday sounds fab I would like to go to Borneo would love to do a safari too, just abit restricted with younger children at mo. Xxx

[Junash]

Morning Posse

Lainie thanks for keeping us posted, you are in my thoughts often. sounds like either treatment will be a positive one so that's great. I met a lady on holiday last year that had taken the chemo tablet, funny how the common link of cancer treatment makes up open up to complete strangers while sitting at a beach bar - anyhow, she said her main symptom was achy wrists / ankles.

Jingo hope you're less achy and you're on the mend soon.

Nicnac- how's the stomach aches? Hope they've subsided. Well worth going for the scan for reassurance.

Hope everyone ticking along, I'm in work but it's very quiet today so I'm catching up with you lot. Much love to all of you xx

[Madam]

Hello lovely ladies and a Healthy New Year to you all. Lainie, thinking of you and really hoping the drugs work and your body can cope. I couldn't log back into this site for the past few months - chemo must have got to my brain as just couldn't remember passwords but this morning, I was thinking of you and wondering how you are all doing and logged in easily. I was back in the UK with my daughter for her common entrance/ eleven plus exams last week - funny watching all the stressed and anxious Mums( OK, I was one) so caught up in it all and I just wanted to remind them of what is really important and what anxiety really is! Took the opportunity to go back to Parkside and had a mammogram (stupid me was wondering how the hell they could possibly put the reconstructed breast on that metal slab! But of course they look at the other one) and it was ok and breast surgeon said I was doing well. Needed to have some sort of sign off or update as here in Qatar, they don't tell you much and don't do any tests until six months after Herceptin finishes! I finished Herceptin just before New Year. Still have tingling fingers, funny nerve twinges, my eyes are definitely not the same and are weepy whether it is cold or windy or sunny!? Since we all started, 5 people I know have been diagnosed with BC and when I was, I didn't know anyone. Shame we become experts on something we never previously knew much about. Hugs to you all and take good care X X Madam / Karen 

[jingo_x]

I think they only consider taking ovaries out if you are oestrogen-receptive - my 3 different tumours were 8/8 7/8 and 5/8, but then again it is probably one of those things that depends on where you live as well! I pushed quite hard for mine to go in the bin.

I'm still a bit sore and have had 'one of those weekends' where a surprise bone scan lettler landed on the doormat on saturday morning - no idea why, but have now had two days to fret over it. I will call tomorrow, but feeling very confused as to why they have sent for me again and why no-one thinks about the anxiety a letter like that causes.

I am desperately keen to book a holiday but cant even decide which continent, so far I have looked at Peru, South Africa, Vietnam and Borneo (a trip we had to cancel in 2014 when I got diagnosed).  I get excited thinking about doing a big adventurous trip again like we used to, then realise that it might all be very different with lymphoedema and I might have to rein it in a bit.

How about you NicNac where do you fancy? 

[nicnac15]

Hi Lainey lovely to hear from you so pleased you have seen your on and are working towards a plan, I can't understand how you must be feeling but like the other posse ladies said we're here to listen and help in any way we can. Xx
Jingo hope your recovering well after you op and thing get back to normal soon. Xx
My stomach pains last from sat till wed then stopped very weird after a visit to the walkin centre the codeine must have helped my scan has been delayed not till 1st Feb still going to go as I want it checked out. I asked for my ovaries to be taken out and they wouldn't do it as they said there is no need to !! Had 2 periods since March and nothing Nov Dec annoying really as I don't know what my body is doing.
Anyone thinking of holidays this year and where to
go ? Xxxx

[AMDriver]

Hi Lainie

I'm glld to hear there is a way forward for you, as Peta said we will all be here for you as you go through your treatment and I really hope it will not be as harsh as last time but if it is we will do everything we can to help.

Jingo_x I hope you will soon be up and about and be on the road to recovery. For what it's worth I think you've made the right decision and reducing the odds of ovarian cancer can only be a good thing.

Nicnac, I hope they get to the bottom of your issues and can fix it really easily, let us know

thinking of you all ladies

xxx

[Peta]

Hi Lainie

It's lovely to hear from you, I've been thinking about you so often during each day.  It's good to hear that you're being looked after  now and that the new treatment should be much easier to deal with than the horrid stuff we all had earlier. Let us know how you get on and feel free to vent your frustrations and emotions on us any time, we're hardened, we can take it!   I hope your family and boys are doing okay too, it must be very difficult for all of you at the moment, if there's anything we can do other than be a sounding board, let us know.  It's great to read that you're feeling a bit more postive at the moment. 

Nicnac I've got a personal friend that's about your age and started chemo for breast cancer just as we finished.  She's also had terrible stomach pains post chemo, which were investigated and they came to the conclusion that it was the effect of all of the hormones on her uterus, making it contract and hurt a bit like labour pains.   I hope yours is similar.  Actually I hope yours is nothing at all and just goes away, but you know what I mean, I hope the checking out all goes fine.

Jingo you're in the wars again, but hopefully this will be the last thing on the list and all will be fine from now on in.  Fingers crossed for you that all the path results are good and nothing to worry about.  

Love and hugs to you all ladies. xxx 

[bettypoppit]

Hi LainieG, both options do sound doable and positive, so keeping my fingers crossed still that your treatment plan shapes up well for you. Hugs xx

Hope you are doing ok jingo_x & nicnac xx

[jingo_x]

Good to have a plan in place I would imagine.  I hear the chemo itself often works really well and mets can even disappear so between the two options it sounds like you have a toss up between two very good treatments in the trial.  Keep feeling positive and lots of love xx

[LainieG]

Hi ladies. Jingo glad your op went well nicnac hope your scan is ok. I saw the oncologist yesterday and there was bad news and good news I have 3 cancerous areas on my liver but 2 are very small. I'm taking part in a drugs trial tho for a new drug that looks promising . However only 2 out of 3 people who are taking part get the New drug and the other gets chemo. The chemo will be much easier than the stuff we had tho. It's in tablet form and I won't lose my hair. I can even work. There will be side effects but they can deal with most of them as they appear. I start treatment in 2 or 3 weeks and should know by then which drug I'm on. Feeling a bit mor positive. Xx

[jingo_x]

Hi Murphy1963, op went well, done laparoscopically so just three holes in my abdomen. The largest one us just above my c-section and they disturb the muscles so that is very uncomfortable at the moment when I move around.

i didn't have Zoldaex but was put on Prostap, same thing I understand but a much finer needle so painless to administer. However I have been having severe migraines lasting 24 hours at a time and not sure why.  I figured one less chemical going into my body would be a good thing, plus I reduce my risk of ovarian cancer and take away a potential metastasis site for my lobular breast cancer (lobular seems to head to different sites). 

Strangely i am now feeling anxious about the pathology results, I guess that after my surprise cancer found after my prophylactic mastectomy, I am worried that the same might happen with this.

Lots of love to you LainieG xx

[bettypoppit]

Hi LainieG, it's really good to hear from you and the Posse is here for you when you need us. Whether you are up or down. Fingers and toes are double crossed that your appointment tomorrow with your onc goes well and you are able to get your mind ready for your new fight.  You've done it before and you can do it again. Big, big hugs and thinking of you xxx

[Murphy1963]

Lainie I am thinking about you constantly and hoping once you get your plan in place you will feel a bit better, although I can totally understand you will be feeling up and down in the circumstances xxxx

Hope your scan goes ok nicnac, best to get these things checked out to put your mind at rest xxxx

hope your op goes ok Jingo. I have thought about asking about this too. I've still got 3 more years of my monthly zoladex injections and I'm wondering if it would be better just to have the op. Could you let me know how it goes xxxx

i hope everyone else is jogging along ok xx

[jingo_x]

Good luck for today's oncology appointment Lainie, I hope you hear something positive, and fingers crossed for your scan Nicnac15. 

Im up early today and in hospital waiting to have my ovaries 'popped out' - doesn't sound too major but I have been feeling pretty good for the last week or so and I'm just a bit sad to be taking steps back and knowing I will be recovering from surgery again in a few hours time.  My choice though so I really, really mustn't grumble!

love to all the Posse xx

[LainieG]

Just had a scan of my liver on Monday and I see the oncologist tomorrow Dreading it but hopefully will have a treatment plan in place and can start fighting this. Sorry I've not been in touch but my mood has been very up and down. Determined to be positive one day then devastated and worried sick the next. I think I'll feel better after tomorrow xxx

[nicnac15]

Hi everyone how are you all doing? hope you all had a good Xmas and New year, thinking of you Lainie hope you've seen the doctors by now and you have more answers to what's going on. I've spent the last 4 days in bed with acute stomach pains which doctors thought was a mystery now sending me for a pelvis scan to see if anything is occurring so back to my not so favourite place soon. Xxxx

[nicnac15]

Hi peta many thanks for the birthday wishes had an amazing time in New York can't stop thinking about it all, got to visit so many places and the highlight was a helicopter over Manhatton and seeing Will Smith in our hotel. Hope everyone had a good Xmas and I would like to wish you all a very happy new year let's hope it's better for all off us, but also thinking of Lainey who may have another journey to get through with our help. Let's us know how your doing when you can much love to you all Xxx

[Peta]

Hi everyone

How are the Christmas preparations going? 

 NicNac I know you're in New York at the moment, have a wonderful time and Happy Birthday! 

And Bettypoppit, lovely to see you on here.  I hope the dogs are doing well and you're looking forward to being actually able to eat some of the Christmas lunch this year.  

Take care ladies and have a great one! xx

[bettypoppit]

Jingo_x, that's great news and let's hope that is the light at the end of the tunnel getting brighter xx

LainieG, that's pants and more worry for you and i guess you have really had your fill of all this. Fingers & toes all crossed for you xx

[LainieG]

That's fantastic news jingo. So happy for you xxx

[jingo_x]

Sorry to hear you are facing more worry, I think radio often leaves shadows and damage to lungs so hopefully it will be nothing more sinister than that.  Will keep it all crossed for you.

had my mouth biopsy results today and both were benign, big sigh of relief  - if I could tolerate alcohol I would have a drink

xx

[LainieG]

Well the day after getting the good news about my driving licence I had a call from the consultant opthalmologist to say there are changes showing on my cheat xray so I have to have a ct scan. Can't believe it. Up one day and down the next. He said it's unlikely to be anything to worry about so hopefully he's right. Hope everyone is as well as possible xx

[jingo_x]

Lainie so sorry to hear that - not being able to drive would be such a major thing, I really hope you are ok to keep your licence.

Nicnac - having my ovaries out will be at my request..currently having monthly injections to keep my ovaries shut down and to stay on Letrozole, so it would be one less thing in the calendar, but also having breast cancer does slightly increase the risk of ovarian cancer and I am still hoping to reach the point where I have peace of mind!  Very anxious about more surgery of course and may well delay it to give myself a break.

Take care Posse xx

[LainieG]

Hi ladies. So sorry you're having such a hard time jingo and Peta. Chemo really does cause us problems doesn't it, and for such a long time too. I have anterior ischemic optic neuropathy in both eyes now and I'm convinced the chemo is to blame. Doc says it could be but no way to know for definite. Only 15% of sufferers get it in both eyes and 3% get it more than once in either eye. Hoping I'm not one of the 3%. Waiting fir the results of a dvla sight test. They might take my license. Fingers crossed for me. It seems such a small thing compared to the worry and awful symptoms others are experiencing tho. I really hope I don't suffer lymphodema. It sounds horrible xxxx

[nicnac15]

Hi ladies not been on for ages so thought I'd drop in and see what's been happening I'm so sorry to hear some of you are still experience problems, hurry up 2016 !!!
I've been wearing a sleeve for the last 4 weeks for very mild swelling on my left arm back at hospital on Monday to get the fluid measured and to see what happens next.
Peta hope u don't mind me asking what is the reason for removing your ovaries I asked my consultant and she said it didn't need to be done even though my cancer was hormone positive. Maybe something to do with my age my periods are hit and miss only had 2 up to now.
On a good note it's my big birthday on the 15th Dec - 40 !! Wowzers I'm off to New York to celebrate as I always said I wanted to be there for it thank god I wasn't 40 last Dec. Before that I've got a big party which has kept my mind busy organising.
Are any of you going away for Xmas new year ? Xxxx

[Peta]

Hi Jingo

Yes, I'm okay, it's been an awful month though, emotionally and physically draining, but we get through don't we?  My ex-husband was 63, so pretty young to just die unexpectedly. The children have done well, considering the traumatic year they've had, I don't think we'll take anything for granted anymore.  That may well be a good thing, not a bad thing. 

I'm sorry to hear that your lymph is causing you so many problems, that sounds absolutely awful and so extreme, to get it on your legs as well oh dear, I hope they can help you.   Colon - as you know I was hospitalised with acute divirticulitus right at the end of chemo.  It's very common, known to affect older people and chemo sufferers, so hopefully it's just a touch of diverticulosis or something similar and nothing more serious.  Chemo really screwed up my gut, I'm still regularly getting diverticulosis pain and have been left with the gift of IBD, which takes some managing. Chemo, the gift that keeps on giving! 

It's good news that your liver is happy, are you managing to drink alcohol at all now? I can drink wine, but I seem to have completely lost the taste for all types of beer, which is a shame.   Still, I'm happy to be here with my family this Christmas, and this year I may even be able to taste the turkey!

I hope you do have a better 2016, Jingo and all of our ladies... xxxxx 

[jingo_x]

Hi Peta

Bad day to ask me that question as I have been blubbing a lot today.  Been a tough few weeks and got tipped over the edge when I went to pick up my new prosthetics and the lady had only ordered one (it has taken months of chasing to even get this far).  I started crying and haven't really stopped!  Annoyed with myself that a minor thing has upset me so much

Had another liver ultasound yesterday and my 6cm 'thing' is stil still 6cm and will now be left alone, so that was good.  Had to have two mouth biopsies last friday though and dont get the results until next week, and I am now waiting to have my colon looked at after a bit of bleeding 😞  Currently doing 2 weeks of bandaging on one of my arms - I go every day and get bandaged to get the swelling down. Like wearing a soft plaster cast so no washing my hair.  Waiting for the results of a lymphoscintography scan I had to determine whether I might always have had a lymphatic weakness (now have LE in both arms and my trunk, and even my legs are showing signs)

So I still live at the hospital - and about to book to have my ovaries out after Christmas.  Hoping by Feb there will be nothing left to look at.

I really hope you are doing ok after everything that has been going on for you? Surely we are all going to have a better 2016?!

[Peta]

How is everyone?  Jingo did you get on okay at the liver clinic?

I hope you're all doing as well as you possibly can! 😄

[jingo_x]

Thanks Linzz, I am due to go to the Liver clinic next week as it happens due to a 6cm (benign) tumour being found on my liver during all my scans last year, so I will make sure I mention it.  Thanks for the tip xx

[Linzz]

Hi jingo_x - I met someone recently who had the exact same problems with alcohol. The bcn told her it might be related to her liver and advised her to see her GP. Not sure what the outcome was, so not exactly helpful to post this BUT chemo hits us so hard I could well imagine the liver taking a hit and being not quite recovered yet xx

[AMDriver]

Hello ladies.

I've been off everything - here and faceboook - whilst looking after my daughter who is still in a wheelchair after her accident. I love my two grandchildren (3.5 and 2) but they are exhausting!

So sorry to hear that you are having problems - I had really hoped that things would have improved over the last few weeks....my thoughts and prayers are with you both.

Like LainieG my cancer was triple negative so I am really fortunate not to have to take any other drugs and suffer these side effects. On the plus side my cousin who had a hormone based cancer the year before me has got over her side effects so hopefully there is a light at the end of the tunnel. I hope it comes sooner rather than later for you both xxx

[LainieG]

Jingo and Bettypoppit sorry to hear you're both still having problems. I hope it all settles down soon. I'm lucky that I don't have to take these drugs. My tumour was triple negative and apparently there is no drug for that so chemo only. Sounds like there are lots of horrible side effects. All the experimenting with different brands must be so frustrating with each causing it's own problems. Thinking about you both and hoping you feel better soon xx

[bettypoppit]

Thanks Jingo-x, sometimes I just overlook the blooming obvious as I had just such issues between brands of anti-d's. Would be well worth my changing brands to see if any improvement. Thanks for the nudge  xx

[jingo_x]

Sorry to hear you are still feeling up and down bettypoppit...and that you might be giving up wine too!

Have you tried switching brand on Tamoxifen?  On letrozole I was ok on Accord brand then was given a batch of Cipla and had awful aches & pains and didnt sleep at all.  Spoke to pharmacist who said different people react to the fillers in different ways and it happens so often that he went out of his way to get me a new supply of Accord and to write it in my notes (as I am typing this I am thinking hmmm maybe I should try a differnt brand too if I want to drink!).  Maybe your brand is making you feel blue and it is worth trying a different one?  On Tamoxifen I did well on Wockhardt but if you look through the chats on here some people don't do well on that brand and swear by a different one.

lots of love bettypoppit xx

[bettypoppit]

Hi Jingo_xxx lovely to hear from you. Sorry to hear that fatigue and lymphoedema are still getting the better of you and I hope you have had a relaxing, restorative weekend and are recovering.  Also, not heard anyone have the alcohol problems that you are experiencing.  Must be such a disappointment 😕. (Having said that, I'm contemplating giving up the couple of glasses of vino I consume at the weekends as I believe it is adding to my feelings of depression).

8 months on and I'm wondering how much of my daily hot sweats, irritability, low low mood (well 1 day fine, next day down) is down to the Tamoxifen? I thought that side effects tended to hit you early on and fade but I'm wondering can they build up as the months pass?  Anyone having similar experiences?

Love to the posse xx

[jingo_x]

Lainie, so sorry to hear that the mystery (and worry) continues for you...hopefully someone will have the knowledge to pull it all together soon and come up with an answer.  I hope the DVLA will listen too.

Bettypoppit good idea to do voluntary work, I have been doing a lot for my son's school and it's a great distraction and makes me feel useful.  However a word of warning - I took on too much recently and after a heavy week's fundraising where I neglected my normal exercise and healthy eating I have been wiped out with fatigue, and my lymphoedema is running riot, swollen hands, arms and puffy all over.  Has made my cording very painful too.  Spending the weekend looking after myself to try and feel better! Starting to realise I am not going to be able to work for a long time, if ever with this lymphoedema.

I have also been having some problems with alcohol, two glasses of wine or two beers and I get extreme migraines for about 18 hours, plus nausea, vomiting and diarrhoea.  It's like I have been poisoned!  Can't find any mention of not drinking on letrozole and its not listed in the side effects so very confusing.  Sadly, the answer seems to be to not drink at all....ugh!

[LainieG]

Bettypoppit volunteering is a great idea. It'll help you work out what you want to do next without the pressure of having to go to work every day. Hope it goes well. Let us know what you do xxxx
My eye appointment was disappointing. They still don't know any more. The steroids haven't made any difference to my sight and I don't know whether it'll get worse or better. I go back in 4 weeks and meanwhile they're going to look into the possibility that the docetaxel has caused it. They are also looking at a vascular cause and, between the blood clots I had and my anaemia, this is a real possibility too. I've sent off a form to the DVLA so waiting to find out whether they'll let me drive. Sorry I'm a moan these days xxxx

[Linzz]

Hi LainieG, I hope your eye appt went ok yesterday. So sorry to hear about your aunt. Life just seems to want to punch us when we're down sometimes doesn't it? Sending virtual hugs xx

Bettypoppit - volunteering sounds good. There will be so many options, I hope you find one to match your talents + interests x

[bettypoppit]

Hi LainieG, I'm truly sorry to hear that you still have some substantial issues and niggles and that you now have lost your Aunty.....life really sucks at times doesn't it! It's a cliché I know, but I've found that time is a great healer - posse hugs in the meantime xx

p.s. it's so great to hear that you are loving work...where do you get the energy from?  I take hat off to you and the other posse who are getting on with it and enjoying it too.  I'm not working - yet (still lack the energy and frankly the mindset).  I just wish I could think of something to pursue that I would enjoy and get satisfaction from. Will have to get a grip at some point but thinking I might dip my toe in the volunteering sector for a few months in the meantime. 

Love to ALL xx

[LainieG]

Hi Bettypoppit. So good to hear from you. Would hate to lose touch. Xxxxx
Nicnac I'm interested to hear that you're anaemic. I have been anaemic since Christmas and on iron tablets since June. My iron levels have come up but my blood count is still low and I now have an appointment with a haemotologist!! Sick of appointments. Let me know what happens with yours. I'm keen to know whether the treatment has caused this. I have another appointment with the eye hospital on Wed to see whether the steroids are working I'm afraid I don't think they are. I feel like my left eye is getting worse. To top it all off my favourite auntie died on Thursday. I can't stop crying which is making it even more difficult to see properly. Sorry ladies I'm a wreck just now. On a positive note I'm loving work right now. Love my class and the bosses are being so understanding about everything. 😊😊

[Linzz]

Hi Bettypoppit, so glad to hear from you I have to admit I've been away from fb myself for a few days. Work has been very stressful this week and taking a step back is helping. Do come back when you feel ready - the Posse needs its regular fix of photos of your lovely pooches

Murphy, I hope you're out there too xx

[bettypoppit]

Hi Linzz, i apologise i haven't responded...I've pretty much kept off of fb for a few days...now i cannot work out where my 'others' folder is! lolol. I appreciate you messaging me though and I'm ok, just over emotional and a bit fragile BUT I'll come good very soon - I know i will. When I'm ready, i might just ask to be rejoin the fb group. In the meantime hugs to you and ALL the posse ..... we still rock 😊xxx

[Linzz]

Bettypoppit I have sent you a message via Facebook but it will have gone into your Other folder. Please reconsider

[jingo_x]

I guess it's good that you now know what the cause is, but you must be dreading more appointments!  Hope everything goes ok for you xx

[nicnac15]

Hi everyone hope your all well or feeling better the ladies which are still having problems.
I've got to the bottom of my dizzy heads went to doctors last Tuesday and they took blood turns out I'm anaemic but they now need to find out why. This Fri I'm back at hospital for a scan on my ovaries because of my week long period they want to see if my normal cycle is returning or if it's abnormal due to tamoxifen. In a way wish they would just take them out stop all these problems. So back on the iron tablets and tamoxifen I go. Then hospital again next week for 1st mammo, gosh dey- ja- vu xxxx

[LainieG]

Hi ladies. I haven't been on here for a while. Working full time is exhausting and I've been taking work home too but getting into the routine now and learning to stop when I'm too tired. I didn't realise how tiring it would be and my Fibromyalgia has been flaring up too. It seems to be a lot worse since the chemo. By Wednesday I'm hobbling around the classroom. I have a lovely class. The kids are amazing. I'm in love with all 8 of them lol.
Sorry to hear what a horrible time some of you are having. Thinking of you and sending hugs. Hope things get better soon. Xxx
Great news on your mammo Linzz. What a relief for you. Xxx
I had my first yearly screening on Tuesday but no mammo. Just a manual exam. Mammo is no good because of my implants apparently. Not too confident in the exam tho. How can she find anything like that? She was happy with it tho. Still got my swollen boob but it's better than it was. Hoping it'll just sort itself out.
Thinking of you all xxx

[Linzz]

Posse - if you're coming to Dublin can you give us a shout on fb so we can work out numbers for the dinner reservation?  Cheers