The operation

Evening everyone

I had an Oncology appointment today, was looked at and told I can now start to moisturise the rads area as the redness is changing to brown and peeling.  Was told they would see me in a year as they want to check my menopause situation, i am on Tamoxifen at the moment but could well change to letrozol next year.   But on a plus woo hoo no more hospital trips.  Well not to december anyway.

Hope everyone is well x

Evening ladies. 

Yup the gremlins are still here, hence not been on here since the weekend. Back to only being able to see my own posts and green lines in between them. Thought I’d check tonight and it’s normal again. 

Im bit getting notifications and I actually can’t remember the last time I got a daily digest so don’t see any new posts which is a real shame. 

Im unfortunately due to make an appointment to see my onco as I just cannot take the pain in my hips hands and feet from the Letrozole, I actually struggle to get up if I’ve been sitting for just a couple of minutes, I feel so so old!!!! 

It looks like it’s been quiet on here so I’m guessing all of you wonderful ladies are up to lots of good things. Xxxxxxx

Hi Jacks, 

forgive me jumping in here, but I wanted to say and ask about the Letrozole, what brand are you getting? I’m on Accord, but am taking Claritin (generic name is Loratidine) as the American haematologists use this for helping with bone and joint pain after the G-CSF jabs to improve white cell counts, and although I got a bit it’s not too bad and I can still move around ok and walk a few miles (3 or 4) for pleasure which is something I enjoy. I’m 73 so a few aches are normal for me! 

Hugs xxx

ps as it’s an antihistamine and they’ve changed the rules round here I have to buy it so look around for special offers and buy the biggest pack I can! 

Jacks77 - Hi lovely, its the same here im not getting daily digests or new posts its very frustrating! These hormone blockers are hit and miss it seems with side effects! Im on Tamoxifen and ive had no side effects at all but my fear is that if im post menopausal which the blood tests show i am then Letrozole would be more effective but due to my age they arent sure! My thoughts are to have an oopherectomy then i definately will be post menopausal so would definately be on Letrozole but then the side effects from bone/muscle pain is more common as you are unfortunately experiencing! Its a mine field isnt it of knowing what to do to prevent this bc from returning! I hope the onco sorts something for you Jacks, let us know how you get on! Deb xx

Leolady56- Glad to hear you are better now from your herceptin headaches and long may it continue!

Aliblue - Good to hear post rads side effects are easing off for you, mine are too, the itching etc was driving me daft and my armpit has been really sore where the skin has rubbed off but it is improving thankfully! Big hugs Deb x

Bigguy, JammyR, JollyG and anyone else ive forgot to mention, i hope you are all ok and improving from the bc poop day by day, love to you all Deb xx

Well that was a completely underwhelming  appointment. Pretty much seen within 10 mins of being there, dr said so had ct scan in jan that was clear,

oh was it,

oh did you not know,

(i did because i had to ask my bcn when as noone had actualy bothered to tell me officially, so i dropped in)

i had it just before my RT,

oh so you had RT,

yes i replied,

oh so how many sessions did you have....

15..............

Do these drs never actually read your notes, or is it that my notes haven't been updated fully?

Surely my notes contain, saw onc in may or whenever it was and that they signed me off other than an annual check up for nextv 10yrs, or obvs not!

So verdict is - back in nov for 1st mammo, then I'll have one annually as part of onc follow up, but would only be seen back in breast clinic nov, then at yr3 or 5 then yr 10. Do self exams, well obviously otherwise i wouldn't have picked it up in 1st instance....rolls eyes..... and any changes then contact bcn directly. 

So wham bam thank you very much and you can bugger off basically.

So asked what signs to look out for in case the unfortunate, hopefully wont but never say never with PT, metastases, his reply, well your ct scan was clear, hmm it may well have been which gives me a base level, but how would you know that doesn't change, cause a mammo ain't going to,pick any changes outwith my remaining breast is it.......i do have a vague idea as I've researched beforehand, but none of which he told me...test failed...he told me only about changes you would expect to discover in a breast if there was potential bc looming, because it'll be hard to use an inverted nipple as a sign whe  you've had a breast removed and if a PT is going to recurr or metastasize then its actually highly unlikely to occur in my remaining breast but be elsewhere as a sarcoma.......bangs head against wall.......and they are the so,called experts?

Hi Ladies

Just to add to the Letrozole debate. I was lucky I got my GP to sign off on Femara. I already take Loratadine for hayfever ..... so I will only stop if needs be

What a bleeping pain in the a*******. Though knowing what is happening inside our bodies is a challenge. I said to someone the other day who was trying to feel sorry for me,"Look around this room, how many people may have cancer and do not know???" So I guess they were hedging their bets as they do. Never ever get 100% on anything these days

Chilling out now I delivered Zhane. He decided chatting to nana between 0100hrs and 0300 hrs was a good plan!!!!!!!!

Totally whacked

Leolady56

Enjoy your chill, how i do not miss those early hours chat a thons, or in our case a baby names book thrust i  our sleeping faces so es could go through his alphabet!

They do grow up quickly though, so on the otherhand enjoy whilst can. 

Know they hedge their bets these days, but even a..... persistant cough that doesn't go etc, may have been helpful........as lungs can be one of 1st places, but hey ho, hoping it'll never come to that, but as mammos will not pick that up.....

Will just have to dive through the bag scanners at the airport instead. Lol

Afternoon all,

so summer holidays started early here with the girls school getting a new build started! Don’t laugh but we have done the school shop for shoes, bags etc already!

 sorry about pants appointment, i was discharged in similar manner but was told I have open access so will contact BCN if any concerns and she gets me in with a doc if needed. Which I’ve alrwdy done wiith the breast lymphedema problem. However next oncology app was booked for mid Aug so I’ve delcined until girls go back to school in sept. So their first day back I’ll be at hospital again

Leolady56 time for some well earned rest I believe. We’re just about to embark on pizza making....well I’m not.....it’s so nice when they can do by themselves but I do remember some messy pizza making when they were little.

Deb09 hope you’ve recovered from your thyroid op 

 JammyR hope you’re still recovering ok form the rads and chemo poop

jacks77 just looked back through all the messages, you look stunning lovely, and rock your new hairstyle. Hope the letrozole issues can get sorted for you.

right I’m off to gynae appointment tomorrow then another hospital for daughter to get her braces and finally off camping with the family and loads of friends....the red wine is already packed!

Jac, I'm not laughing, as ys is moving schools i did most of school uniform etc shop before they broke up. Shoes bought on way back from hols whilst shop slighty quieter and just a couple of special items to get.

I did get told any changes to just speak to bcn, so have open access too, only saving grace of feeling slightly fobbed off again.

Hi Jacks

interesting suggestion re Letrozole plus Claritin - I might give that a try though I already rattle when I move thanks to too many pills already.  I don't know how long you have been on Letrozole, but I have found that I seem to have cycled through pretty much all the side effects since starting them in early March.  Hot flushes, vaginal bleeding, carpal tunnel, muscle pain, itching - and of course fatigue, though hard to tell whether that is Letrozole or RT to blame.  Or both.  What I have found is that most side effects have subsided.  Hot flushes now largely gone, vaginal bleeding was just for a couple of days, and so on.  What they told me at hospital was it takes about a month for many components of a drug to get into your system, and potentially about six months for the body to adapt.  About 10 weeks in I was so distressed by the aching joints that I was really wondering whether I could cope with these pills for next five years.  But now, perhaps 15 weeks in, I am beginning to feel somewhat better.  I still get more tired than I would like, I still ache (particularly in hands and feet) especially when I am tired or have not moved for a while, such as first thing in the morning.  But it is getting more manageable.  They have just started me on Adcal-D3 as well, and I will soon be onto Zoledronic acid infusions too to counteract (as I understand it) the  potential bone thinning problems caused by the Letrozole.  As to brand, the ones I am on are Dr Reddy's.

Hang in there, and hopefully things will improve.

Queenfisher xx