Anyone want to be my chemo buddy? Start may 9th

[Tanyette]

Hi Trisha, I'm so sorry I'm so late replying, I've not logged in for a while. I hope your treatment is going ok. I haven't had  herceptin I'm on Letrozole. Yes I'm a year ahead of you and I'm sure at the minute it seems forever away but it does pass quickly though it doesn't feel like it at the time! I'm just now feeling as though I'm getting back to the old me and I'm sure you will too. It's such a shock to the system isn't it when we are diagnosed. I have to say this forum definitely helped me get though it because unless you've been here people don't understand. So you've had your fec's have you started yourDocetaxel yet? I found the Docetaxel harder than the fec but just rested up and watched loads of daytime telly! I found with the fec I could function pretty well after a couple of days but needed much more rest with Docetaxel. How are you feeling at the minute? Are you coping ok with chemo. Fingers crossed you can have a lumpectomy but if not a lot of the girls on here have had mastectomy with reconstruction and are doing really well. I was lucky because my surgeon said due to size and position of tumour I could have lumpectomy. Where are you having your treatment? I was at The Christie in Manchester. Hope to hear from you soon and once again sorry for the delay in replying  Xx

[Trisha69]

Hi Tanyette,

Year a year ahead of me. 

Ive HER2 pos,

Had 3 cycles FEC, then got 3 cycles of Docetaxel and Herceptin.  Thne surgery (Not sure if Lumpectomy of Mastectom), my BC Nurse talking more about Mastectomy 😞  Then 15, 3 weekly cycles of Herceptin, and Radiotherapy 5 days a week for 3/4 weeks dependant on the surgery.

Would love to chat and hear how u have been getting on.
Trisha

[Tanyette]

Thanks OAD, I bet you will be glad to complete herceptin. Yes would be nice to know how everyone's doing! Take care X 

[On a diversion]

Hiya, 

Brilliant news Tanyette! 

I'm still on herceptin. Another couple of months and my active treatment will be over, at last! Strange to think that most of the May 2016 starters finished active treatment in the autumn! 

Hope everyone is doing well.

x

[Tanyette]

Hi OAD, yes I got good news a clear mammogram! I've got my appt with breast surgeon on Thursday this week and she will apparently examine me but hope that's just a formality with the mammogram appearing ok. I'm still very tender at top of ribs on affected side and the bone above affected breast but just hoping that's the radiotherapy side effects! What treatment are you still having? I'm on Letrozole for 10 years xxx

[On a diversion]

Hi Tanyette, Hope all went well, have you had your results yet? I'm still having treatment so still living in three week cycles! X

[Tanyette]

Great to hear from you OAD! Thanks for replying, I wondered if the soreness was normal but McMillan nurse said it was due to radiotherapy. I was hoping they would tell us the mammogram result the same day with it being our first one post treatment but probably not if you got a letter. Hope you are keeping well and getting back to normal. Xx

[On a diversion]

Hi Tanyette,

How strange, I've just looked on here for the first time in a month or so and saw your message! I had my mammo a few weeks ago, they sent me my results in a letter about a week later.  I was worried about the pain too, the radiotherapy has left me sore and I get twinges of pain but it wasn't as bad as I imagined and it doesn't take long.

Hope this helps xx 

[Tanyette]

Hi all May 2016 starters! Don't know if anyone still logs in but just wondered if anyone knows if we get results on the same day from our first mammogram following treatment? I've got mine on Monday and don't see consultant until 20th and can't imagine waiting 17 days to see if everything's ok! I thought I would keep calm but dreading it if I'm honest. I'm still quite tender and can't imagine having the mammogram! Hope you are all well xxx

[Guest user]

Hi again
Anyone got any old scarves they dont need any more? Pls message me xxx

[Guest user]

Hi ladies
Im looking for donations of your lovey headwear. Anyone who can help please inbox me xx

[Guest user]

Hi
Thanks....yes you should look fab! A delicate sparkly headband/ tiara would look great too.
I too am in herceptin and tamoxifen and its still growing well.....my eyebrows and lashes have returned too.. My last chemo was the end o f August. I did use hair growth shampoo n conditioner....no idea iif that helped. Xx

[Rooner999]

Ah I can see it now, you look fab Tina.  Thanks ladies, now really happy that I will at least have something on my head to get married!  Might need to re think head gear but at least I have more hope xxx

[On a diversion]

Thank you Tanyette, I reckon we deserve it 😘

[Tanyette]

Happy New Year OAD! Hope it's a good one for us all x

[On a diversion]

Happy new year Chemo buddies!

Just realised that this is the first time I've been on this thread this year 🙂 

Here's to a good year x

[On a diversion]

Hi Claire,

It's Tina's profile picture, if you click on her profile you will be able to see it. She looks great, lots of hair! 

My hair is thick but isn't that long, but I am still on herceptin which is possibly slowing down growth. 

It seems that most people have a good covering of hair 4/5 months after their last chemo.

xx

[Rooner999]

Unfortunately I can't see your picture Tina x

[Guest user]

Hi

Well ive put a pic on but its sideways....hope you can see it x

Spoiler

[Guest user]

Hi... Happy new year all! Im doing ok....im back at work monday.....aaaargh! My lasting annoying symptoms are painful joints and my feet are numb/ tingly..... Tricky walking at times and worse when i get up.....if it carries on im gonna ask for the amatriptilyn ( or however you spell it).
Regarding the hair sweetie mines now a style rather than prisoner cell block h. Ive even had it a new colour....lilac!! Its awesome...i dont know how to pop a photo on though!
Tina x

[Flower2016]

If you look down a few on this thread, Sue has posted a picture of herself a little while ago. She finished just after me. Her hair will be longer than that now. X

[Rooner999]

Thank you so much Flower2016. That fills me with hope; I can defo cope with a judi dench! Xx

[Flower2016]

Hello Claire

I had last of 6 x TAC at the end of August. I have Judy Dench hair at the minute! A short pixie crop but looks like a hair style rather than illness/army. I am on verge of ditching the wig at the moment. You will have hair for your wedding but it will be short. Good luck with your treatment. It is hard to see an end point but it happens, and don't worry about radiotherapy at all. It is nothing to worry about. Hello and happy new year to my "chemo buddies." Xx

[Rooner999]

Hi Ladies

I am in the December thread having just had my second FEC with one more to go then three T.  I am getting married in August and would like an idea of wether I will have any hair at all (I know evryone is different) and just wondered if you ladies that started back in May would be able to let me know how your hair is doing currently (pictures would be awesome).  As you lovely ladies are at the stage I will be in August.  I really dont want to wear a wig on my wedding day but I know I have to be realistic.

Thank you to anyone that can help.  Claire xx

[Tanyette]

Hope you had a lovely Christmas CalB, and all the best for 2017 to you and all May starters xx

[Cal B]

wishing everyone a very merry christmas, hope everyone is feeling stronger. x Cal B 

[On a diversion]

Hiya again,

Tanyette, thank you and I hope we can all keep in touch too.

Sue, Sounds great. And yes don't we rock! We've gone through so much and we're still smiling. 

Lots of love OAD x

[Sue H-S]

Hi  On a diversion!

I echo your thoughts! It has been a tough time for all of us - and for some of us it still is.

Went to a Christmas Dinner yesterday. It was the first time this year, that I had a perfumed bath, did my finger and toe nails and made myself glamorous for going out. I had my 'new' hair trimmed for the first time on Tuesday.

At least from the outside I am on the way back to my 'old' self.

So wonderful doing these things for the first time again! Standing in front of a mirror and being able to say to oneself- girl. you still rock! Something, which was so normal before, suddenly has a whole new significance.

                                                               

 Hoping all others are recovering well, too. It is not easy and will take time. Be kind to yourselves.

Hugs

Sue x 

[Tanyette]

Hi OAD, hope everything is going well for you. It's been one heck of a ride this year! I hope you and all our May starters have a wonderful Christmas and can look forward to a great 2017!! X ps hope we can all keep in touch on here occasionally.

[On a diversion]

Hi May starters, just want to say hope you're all well and  thank you for being there this year!  X

[Cal B]

Hi Geri, pleased to hear you have completed treatment, hopefully you are not too sore from radiotherapy. I am sure this next week will feel strange when you are not needing to be anywhere at any time. Hope all check ups go well. X Cal B 

[Tanyette]

Hi Geraldine, great to hear you are nearly finished with radiotherapy, you will breathe a sigh of relief tomorrow! 23 sessions must have been exhausting, I found fifteen tiring! I think you have done so well to work through treatment and a you deserve some time off. As you said we have all had one heck of a year but I hope for all of us 2017 is a new start and we can put everything behind us. Keep in touch, take care xx

[GeriF]

Hi ladies,

So lovely to hear how everyone is doing. I'm still in treatment and finish on Friday. I had 23 sessions of radiotherapy and I'm so glad it's nearly over as I am mentally and physically done. I have a review with the consultant on Fri after treatment & another on the 2nd Dec with my own consultant. As I'm triple negative I have no more targeted treatment which terrifies me to be honest but I'm sure she's put my mind at rest. I've worked all through treatment so looking forward to some time off. Love the idea of complementary therapies so will look into that :-). Like some of you, my arm is stiff and uncomfortable and my boob very pink and hard. What a year it's been!! We can all look forward to Christmas and new beginnings in 2017 xx

[Tanyette]

Thanks CalB, I'm seeing lymphoedema specialist tomorrow so will mention to her about the discomfort in my breast and my muscle under my arm maybe she can advice, glad things have settled down for you, take care Tanyette xxxxxxxxxxxxx

[Cal B]

Hi Tanyette radiotherapy did effect my arm - it was almost back to how it was following surgery to clear lymph. Armpit fely numb and swollen (it wasnt). The cording started but I was religiously stretching and that helped. I had a few sharp pains in my breast but not for long. It has all settled now 3 weeks post radiotherapy. Hope your side effects improve and dont cause too much worry. X C 

[Tanyette]

Hi CalB and all other May starters, hope you are all doing ok and looking forward to Christmas! It does seem CalB that most people are ok when they first start Anastrozole or letrozole and if there are going to be any side effects they seem to kick in a few weeks in. I've read quite a lots on the drugs and it also seems that the aches and pains do quite often subside again so we can but hope! My nails are are still sore and breaking off but I've been told once everything is out of my system they should improve. I'm starting 6 weeks of complimentary therapies on Wednesday so looking forward to that. Have you had your check up with the radiology consultant? I have mine at the end off November. The only other drs appt I have is with my surgeon in March which I got after my surgery but I am seeing lymphoedema specialist on the 14th Nov so I suppose I may continue having some kind of treatment for a while because like you I think it will be weird when everything finishes. Good luck on your return to work it sound like you have a lot of support there. Can I just ask you CalB and any of the other girls on here if they've had any discomfort following radiotherapy? I am getting quite a lot of discomfort in my affected breast and muscle under my arm but I have had axillary clearance and radiotherapy  to supra clavicular nodes as well as breast so I presume this is normal?? X 

[Cal B]

Hi one and all I have just dropped in to catch up on the thread and to see how everyone is doing. Great to hear so many have completed or nearly completed active treatment. I am now taking anastrozole every day and up until this week was finding it ok. I have just started having a few pains in my left elbow, not bad but nagging ! I return to work on the 21st and have been given the opportunity to do some days at home and some days at school which is fabulous. I have signed up for the 'moving on' course which starts at the end of Nov for four wednedsays. I am not sure what to expect as I return to work but will take it one day at a time and have some very supportive colleagues and boss so I know I can rely on them. 

I am still moisturising skin and treating nails but skin is doing ok and nails are a little sore but are still intacked. My hair is coming through and I am hoping that by Christmas I won't need hat and false fringe any more! Maybe that more about me than other people? 

Not sure when I will have a review with oncologist but assume it wont be too far in the future? Seems very weird not to be seeing someone for some kind of treatment!! Bestwishes one and all. Cal B 

[Guest user]

Hi jobey
Its unbelievable yet it isn't....many of my family havent even text to see how im doing. You certainly discover whos an actual friend through this crap. Theres no excuse in my eyes these days...a text takes a few seconds ...... Not asking for a visit n flowers! Just to know someones given you a thought is all id expect occasionally.
Im going to find it a bit awkward when i finally return to work facing "friends". But i suppose theyll be feeling more awkward. X

[Jobey68]

You deffo have to be part of our "exclusive" club to really understand! My eldest sister barely came to see me in the months following my diagnosis ... she lives 200 yards up the road.... she found it too upsetting.... ummm how the feck did she think I felt!!!! ????? 

I got my gel in Holland and Barrett Xx 

[Guest user]

Hi
No...not a clue....but.....i dont think I'd know what to say if i was them. No one can understand it unless theyve been through it. I dont think.
' vera at number 64 had it 3 years ago n shes fine!" thats a classic i get al the time.
Ill get some of that aloe vera. I had some but left it on holiday! Grrr. Xx

[Jobey68]

Tina I found pure aloe Vera was the best, really cooled the pinkness down, im not surprised you are fed up after all you be been through, if I had a fiver for every time I've heard " you're all right now though aren't you" and the main culprit is my own sister! Not a bloody clue ...... xxx 

[Guest user]

Hi
Rad number 10 today n i must say im rather pink!! Plastered myself in aveeno so hope that helps.....getting a bit diwn n fedup of all this now if im honest. Seems ive not felt 'myself' since march....cant even remember what normal is!
And im sick of hearing things like " oooo nearly over now bet youre relieved and can move on" and "oh i bet youre a different woman now and have a new lease of life"!
No i bloody haven't!!
The balls of my feet n toes are virtually all numb now....makes walking uncomfortable...apparently its a herceptin side effect. Ive an appt with my oncologist about it but not till middle of December!!
Sorry to be a moaner xx

[Tanyette]

Hi Geraldine, great to hear you are back at work. I'm not ready yet waiting to see lymphoedema specialist, depending on what they say I may go back to work before Christmas. Great that your hospital is on your way home! That's been the worst thing for me mine is about an hours drive away so daily trips has been quite a chore! I only had 3 weeks,15 sessions but you are having 23 don't know if it depends on our areas. Good luck with rest of your rads, take care xxxx

[GeriF]

Hi ladies, it's great to see that you're doing well. Chemo seems so long ago but still have the painful legs and joints as the reminder. I've had 8 sessions of radiotherapy with 15 left & so far so good. I'm back at work & fortunately I pass the hospital where I'm being treated so see it as a pit stop en route home. Reading your postings it sounds as though we've all been given the same warnings/tips re skin so will keep on top of that. Take care all, love Geraldine xxxx

[Tanyette]

Hi everyone, thanks for the info Sue I will have a chat with my bc about it. My skin seems to be ok at the minute, my breast and around my clavicle is tender to touch but I had my sub clavicular nodes treated as well as my breast so I presume it's normal to get some tenderness. I agree Tina it is surreal seeing October starters! I'm on half pay too from next month but as you say I don't feel I am ready to return yet to many aches and sore hands, nails and feet to contend with! But hopefully things will settle after a few weeks, we can but hope! Glad to hear it's going ok for you OAD, you are having an extra weeks rads to me as I only had 3, as far as the aches and neuropathy go we just have to hope they ease off with time. Nice to hear from everyone again, keep in touch, speak soon xxx

[On a diversion]

Hiya,

I'm still looking in here every few days. I have found radiotherapy okay in comparison with chemotherapy but have been told that I need to continue moisturising 2 x a day for 2 weeks afterwards when the effects peak and then 1x a day. 

Tina, I'm not on Tamoxifen etc because my tumour was hormone negative and I have the same very achy joints etc, peripheral neuropathy particularly in feet etc so I think it is either the after effects of chemo and/or a side effect of herceptin and/or a symptom of medical menopause!! I think the radiotherapy runs us down a little too. It's everything! I have down similar work to you in the past so know exactly what you mean about needing to be on top form and also about how surreal it all feels. I also find it very sad that so many women (mostly) are affected by this cancer and so many of us under the age of 50. 

Take care everyone xx

[Guest user]

Hi all
I too have just been reading our forum now n again.
I just finished week 2 of 4 radio . apart from the travelling and waiting around its easy peesy. My only problem now is awful joint pain!! Im walking like im decrepid 1st thing or if Ive sat for a while. And my treated sides shoulder is permanently painful. Also my feet( toes and balls of feet) are really uncomfortable.Paracetamol help a little. Im presuming it's the herceptin but its weird it began the day after i began the tamoxifen. A doc i saw at the hospital said tamoxifen shouldn't cause it but if i switched to anastrazole....that does cause pains! They don't want to switch me anyway because im 49 and although not had a peroid since chemo im not definitely through the menopause.
Im worrying because ill be on half pay next month so need to get my achy ass back to work! Just cant imagine working though feelin like this! I work in a special school with v challenging children so i need to be on top form lol.
Love to you all xxxx
Ps anyone else feel surreal when you look n see October 16 starters etc....it seems sooo long ago since we too began this....and we have (and still are) going through so much.

[Sue H-S]

Hi Tanyette,

Lol - I am sure others are still lurking, too. Congratulations - you are through, too - just watch your skin at least for the next two weeks and moisturize. I have read and also been told by the radiographer, that the 'burn' often comes through post completion of the therapy.

As to my tablets - this may explain it all - 

Side effect of Letrozole: Bone thinning
Taking letrozole for a few years increases your risk of bone thinning, called osteoporosis. This
can increase your risk of a broken bone (fracture). You will usually have a bone density scan
to check your bone health before and during treatment. If you are at risk of osteoporosis, your
doctor may prescribe drugs called bisphosphonates to protect your bones. They will also usually
advise you to take calcium and vitamin D supplements. Regular walking, eating a healthy diet,
not smoking and sticking to sensible drinking guidelines will also help to strengthen your bones. 

Info from http://www.nhs.uk/ipgmedia/National/Macmillan%20Cancer%20Support/assets/Femara(Letrozole)(CB).pdf

So the calcium is to support the bones and try to counteract the side effects of Letrozole.

Bonefos is the bisphosphonate.

Bisphosphonates are not routinely prescribed in all NHS areas, thankfully they are in mine, as they

This is more information regards that drug regime, which makes interesting reading - http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/bisphosphonate/what-bispho...

Once you have read the info - you might probably want to talk to your oncologist...

Hoping your skin holds up over the next few weeks - mine is itching like mad at the moment - and I can see a definite reddening of the treated area.

Hugs

Sue xx 

[Tanyette]

Hi Sue, I'm still lurking lol, have to read posts once a day it's kind of become a routine!! I had my last radiotherapy today and it's lovely to have completed active treatment. You are on a few tablets!! I've only been put on Letrozole. How come you have to have the calcium and vit d for 10yrs? Or the Bonefos? As you say good job you read the leaflet! You can do without aggravating kidney stones! My son had them last year and the pain was excruciating! Let us know the outcome from your enquiries, take care xxx ps hope everyone else from May starters are finished or nearly finished active treatment, onwards and upwards for us all now! Xx

[Sue H-S]

Hi all

who are still lurking, lol.

Had my last radiotherapy session yesterday evening, so active treatment now done. Yay!

Mind you, I was told that the fatigue and the 'burn' may set in over the next two weeks - so for those of you, who are not 'done' yet - keep moisturising!!!

Now have all of my medications, which I have to take for the next few years.

Bonefos (sodium clodronate) a bisphosphonate - minimum 3 years

Letrozole - 10 years

Evacal D3 - calcium and vitamin D - 10 years

As and when you get your medications it may be a good idea to read the accompanying leaflets in detail!

Because, as I did, I found out - before taking my bosphosponated (twice a day) 2 hours before and one hour after - no eating and only drinking water. And I can only take the calcium 4 hours after taking the bisphosphonate. Very, very challenging - my whole day would revolve around what I can do when - to ensure I take the medication properly. Not desireable or doable for the next however many years. AND - the leaflet for the calcium advises not to take, if having kidney stones, which I have (quite small ones) - they found them after my CT scan.

So called my wonderful BC  nurse - to talk to the oncologist to review to ensure a) that I have a life other than moving from pill to pill and b) to get calcium into me without aggrevating/growing my current kidney stones.

It will be intereting to see what the outcome is.

Hoping everyone is doing ok.

Hugs

Sue xx