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April 2019 Chemo Starters πŸ’–

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Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

 

Well the results of the wash in wash out hair colour was just that - a wash out!  Just gave my hair a very slight pink tingeπŸ‘Ž

 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Liz 

 

I'm desperate to dye my grey hair - please could you let me know what brand you used, many thanks.

Louise

Member

Re: April 2019 Chemo Starters πŸ’–

Thank Liz.  I have bought a wash in wash out one to try. i will let you know the outcome,

 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi

 

I dyed mine last week with no problems as I couldn't stand the grey!

 

I recently met a hairdresser who said you can dye at anytime, she recommended dyes without ammonia, I found one in boots

 

Liz

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Has anyone dyed their hair yet? how long did you wait before dying it?, mine has come back a salt and pepper grey.  I don't mind the shortness of it (i think) but not the colour.  My young natural colour was brown.  I still have Herceptin and Pertuzumab every 3 weeks so not sure if that will effect the outcome of the dye!

 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hello Debi

Thats great news about your CT scan!! I bet you are so relieved!!  Fingers crossed your ultrasound is ok, its puzzling why you are losing weight tho.  I put on so much weight im still trying to shift it!!  

Take care

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Everyone

 

Got CT scan results today, everything looks fine - nothing that overly concerns consultant.  I have to have a ultrasound scan on my womb (swollen) and my seroma under my surgery arm.  If i carry on losing weight and having upper abdominal pain he would like me to have the camera down.  Feel a little relieved but not as much as  i thought i would be.  My scan also showed up a recent fractured rib !! (i thought i had badly pulled a muscle😱.

 

Debi xx

Member

Re: April 2019 Chemo Starters πŸ’–

That’s brilliant news, Sue. I’m so pleased. 
I’ve just had an appointment with my oncologist and one of my questions was how worried I’d have to be when I make any observations. Very tricky and I didn’t get a straight forward answer. Shouldn’t really have expected one anyway but I suppose it’s best to be cautious and more concerned than we would normally be. 

I have started to do exercise; three sessions a week. An exercise class (circuit training) and 2 sessions in the gym (combination of cardio and weights). I’ve never been into gym exercise but I find it very helpful. Mainly because I feel so much better for it. I can feel my body changing for the better. But more importantly, I feel safe while exercising. I have lost confidence in my body and my balance is a real issue. It’s probably due to the neuropathy which is getting better but hasn’t completely gone and the controlled environment helps me getting in with it.

I am please 2019 is coming to an end. This time last year I had no idea of what was ahead of me and what a tricky year (Total Understatement) it’s been; I think we all deserve a better year ahead. I wish you all a happy and healthy 2020.

 

Oots

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Had informal report from xray, oncology registrar couldn't see anything nasty on it. But I've still no idea why it is so painful, can't lie on my left side at all. I'm seeing onc mid January, so hopefully she'll have some ideas. 

 

I've also had the go ahead to have my ovaries removed, instead of monthly zolodex, should be in February (they offered me a cancellation on Christmas eve,  I politely declined!) 

 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Sue, delighted to hear your news re the CT scan. So hard not to worry but great when you get a good result. 
enjoy the rest of the Christmas break. X

 

Member

Re: April 2019 Chemo Starters πŸ’–

Liznsarah

Have you had the results back from your xray on your pelvis? I hope it was all okay.

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi

Yes i can understand that you want to switch off from it all over Chriatmas.  Im an over thinker and i knew it would be constantly on my mind so i needed the reassurance.

 

Ill keep my fingers crossed for you.  Let me know how you get on.

 

Take care

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Sue

 

I haven't heard anything back from my scan which was last Thursday 19th.  I could have called to ask but i want to wait until my appointment on Jan 3rd, i just want to try and enjoy myself over the Christmas break.  I will probably ring and make sure the report as been sent to my oncologist so he has the results when i go.

 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Deni

Thank you so much

Have you had your scan results yet? 

I rang the hospital this morning and they told me to ask my GP to chase the radiologist to get them to report on it asap, which they did and i heard back within an hour or 2.  Stress to them that you are anxious as you have already had treatment this year, they shouldnt make you wait until the new year.

 

Good luck xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Sue

 

That is wonderful news.  I am so pleased for you.  Have a great New Year.

 

Debi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello ladies

I wanted to share my news with you all.  I had my CT scan on xmas eve.  My GP has rung me today to tell me that the shadow on my lung is a change in tissue following the radiotherapy.  I also have a small infection for which my GP is giving me antibiotics.  No sign of cancer in the lung!!  

 

I am so relieved!!  Ive been worried sick for days!!! 

 

My GP has requested a repeat CT scan in 3 months to make sure it has all healed.

 

Thank you everyone for your kind thoughts, i am so touched by you all.

 

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Everyone

 

Haven't been on for quite a while, had a few problems with logging in but all sorted now. 

 

Sorry to be hear about your current situation Sue. I've just had an xray of my pelvis as I've constant pain on one side, hopefully get results today. Can't help but fear the worst, but balancing that with its probably just nothing. I also lost weight during treatment but it's stabilised now. 

 

Have had a lot of problems with my mood, emotions and anxiety since the intensive treatment finished, GP finally took charge and insisted I have some medication, which is helping. My onc said this part is the hardest, didn't want to agree with her but now I do!

 

I've just returned to work, I'm finding it hard as I feel under confident, there was an email sent to tell people I was coming back and not to ask about how I am as I was concerned that this would open the floodgates!

 

Anastrazole has been a challenge, but now I'm in Teva brand it's great, the cheaper ones gave me horrendous side effects

 

I hope everyone has a nice Christmas, I've got mixed feelings about it as the last year is so fresh in my mind and I find it a  struggle as I feel guilty I'm OK, when some of my new friends have just been told they have spread and are palliative.

 

Thank you for all the support this year 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Sue - I am sorry to hear of your worry, i too am in the same situation.  My doctor sent me for a CT scan and blood test because of a pain i have in the middle of my chest and because of the weight i have and am still losing.  He said it was just as a precaution and he wasn't overly worried.  Even though he said that , i just keep thinking it is something more sinister and he just doesn't want to upset me before Christmas.  I go back to see him on Jan 2nd to find out my results.  I am trying to put it to the back of my mind but it keeps creeping back and then i get all upset.  I don't think i can cope with any more.  I hope you get to the bottom of yours, try and enjoy Christmas, this as taken up too much of our lives already don't let it consume you with worry.  I keep this quote about worry on my desk top, it gives me strength:

No photo description available.

I also listen to Queen "Don't stop me now" on full blast and sing along to it.   πŸ˜Š

Debi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello all, 

 

Long time I haven't been here! I'm sorry to have dropped out of action - I found everything with treatment a bit much a few months ago and pulled back a lot from the internet. Which is a shame as I always found this forum very helpful! But I'm 6 weeks post-radiotherapy now, and feeling mentally better. I'm at home in Australia for Christmas (the 24-hour flight was interesting with my achy joints and muscles from LEtrozole, but I made it!). It's so nice to be home - there was a time back in March I thought I might not see the gum trees in my mum's front garden again. 

 

Sue - I'm really sorry about this stress before Christmas. I know it's easy for us to say, and we've all been through the fear of waiting for results, but try to remember that most shadows that show up on scans are benign. There can be many reasons for these things on lungs that have nothing to do with BC. I have all my fingers crossed for you. 

 

I wish everyone a very happy Christmas. As a friend wrote on a Christmas card for me a few days ago - here's to a boring 2020!

 

Member

Re: April 2019 Chemo Starters πŸ’–

Oh Sue , I will be keeping everything crossed for good news for you. Easy to say but try and put it out your mind and enjoy Christmas with the kids. What will be will be in January. 
I really do hope for good news for you. Can only imagine how you’re feeling just now. Xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello ladies

Its been very quiet on here recently, i suppose everyone is getting back to normal (if thats possible!!) now their treatment is finished.

 

Ive had a bit of bad news, ive had a sore back for a few weeks so went to see my doctor, she sent me for an xray and the doctor rang me to say there is a shadow on my lung and theyre sending me for a CT scan.

 

Im absolutely terrified and worried the cancer has come back.  Im hoping i have the scan ASAP, and find out the results soon after but im so so worried.  I know i will go to pieces if its bad news.  I really dont want this hanging over me, i was looking forward to xmas just me and the kids but now this is spinning around in my head.

 

Sue xxx

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

Hi debi, please use the phone number at the top to discuss. I lost weight from diagnosis, through treatments because I’d stopped eating any junk. Your team are just being thorough which is what they should be doing, please speak to your assigned bc nurse too, they are there to answer any questions you have regarding everything ❀️ Sending πŸ’•πŸ’•βœ¨βœ¨shi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

 

I hope everyone is well and getting on with things.  I noticed there hadn't been any message on the April post for quite a while.

I popped on to ask a question (hoping someone is there😊) I just wondered if anyone as lost weight from the start of their diagnosis?  I was weighed by my consultant today and i have lost around a stone since March.  He has referred me for a blood tests and a CT scan which has really worried me. 

Any one have the same?

 

Debi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello Debi

So pleased u have finally got a date for your radiotherapy YAY !!  Thats great you will be finished in time for xmas!!

 

With regards to your holiday, BOOK IT!!  Dont let the **bleep** (thats what me and the kids call it!!) stop you from enjoying yourself.  We went on holiday in october and it was great to relax and forget about all the crap that has happened to us this year.  The holiday will be something for you to look forward to and you deserve to enjoy yourself.

 

Hope all the ladies on here are keeping well? It certainly is quiet these days now a lot of us have finished our treatment, and our lives are beginning to get back to the way they were before.

 

Take care

Sue xxxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Everyone

 

Radiotherapy starts on Wed - 20 sessions.  Will be finished just in time for Christmas!

 

Can i just ask - does anyone feel reluctant to plan anything for the future?  I was going to book an holiday for Sept next year but i fear that if i book it something 'C' related will pop up and i will have to cancel and fear losing my money.  Is this a normal feeling or am i being paranoid?

 

Debi x

Member

Re: April 2019 Chemo Starters πŸ’–

Brilliant. I hope it all went well yesterday. You must be relieved it’s done. And radiotherapy is time consuming but not nearly as tough on the body. 

I think we should all hope for a better 2020! 2019 was a bit rubbish to say the 
least.


Oots xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello Kelly

Good luck with your last chemo and make sure you ring that bell loud and proud!!!

 

Radiotherapy is a breeze compared to chemo!!

 

Hope all the rest of the ladies are doing ok?

 

Take care

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

 
Member

Re: April 2019 Chemo Starters πŸ’–

Hello girls

well the day has finally arrived. I have my last chemo session today πŸ‘

. it’s been a long time coming, but it’s finally here.

will just have 3 weeks of Radiotherapy to do, after this, then I can put this horrendous year behind me.

hooe you are all doing well x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi 

 

I am in Yorkshire (west).

 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi NikNak

Im in Warrington (cheshire).

Sue xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Sue

 

im in Suffolk, where are you? 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi All

Its lovely to hear from everyone again and great to hear that we are all getting to or have got to the end of treatment.  

Sue it would be lovely to meet up with everyone, i am sure we could arrange something.  I think the February starters did this, not sure if they did it through private messages - i will have to have a look.

I am still waiting for my appointment for planning session then i can crack on with radiotherapy.  

I was looking into Oxygen therapy which a friend had suggested to help with my recovery, has anyone else tried this?

I am also going to overall my diet to include cancer fighting foods to lower the chance of recurrence.  Does anyone else eat differently now to include these foods?

 

Wishing you all well

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hello ladies

Sorry not posted on here for a while, just been reading the thread and it sounds like u are all doing amazing with your recovery.  Good luck to those ladies still undergoing radiotherapy.  Hope you are coping well with any side effects.

 

Im slowly returning to normal life.  If that is at all possible!!  I get very emotional when i talk to people and tell them my treatment is finished.  It feels like a lifetime since i was diagnosed in february, the treatment took up most of this year so it feels odd now treatment is at an end.  My hair is growing back quite quick now, and starting to use shampoo on it again - i stopped washing it in May when it started to fall out so it feels weird to wash it again!!

 

I was lucky to go abroad with the children last week, we had a lovely week in Spain.  As well as my diagnosis and treatment, u may recall i also lost my mum to breast cancer in February.  My lovely work colleagues held a fundraising day a few months ago and we used the money to go on holiday.  We had a lovely week in the sun and it was nice to put the awful year behind us.  Sadly we had our cat put to sleep the week before we went away, he was a very well loved little man and we all miss him.

 

This week i will return to work.  Im on a phased return for the first month.  It will feel very odd to go back to work but also looking forward to returning to normality.  I know im going to be so emotional but ive had amazing support from my work colleagues and i know they will be making me lots of tea to ease me back in.

 

I know its been mentioned previously but if anyone would like to meet up to put a face to a name i would love to - not sure how it would work logistically but it may be nice to do over the xmas holidays?

 

Take care ladies - u are all amazing!!!,

Lots of love

Sue

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

 

i have not been here for ages. Mainly because I tried to move on and it has been a battle. I had my radiotherapy in July and it was so much easier than chemo but I was sooooooo tired. I used E45 dermatological cream for dry skin twice a day and had no problems with the skin at all. 

The biggest problem since completing all my treatment was the fatigue. I was too tired for anything. Perhaps there was a psychological element there too. The fighting was done and I was losing the fighter attitude. Most afternoons I had to sleep for a few hours. In addition to that my muscles had wasted away and I was very unfit. I am also experiencing the most amazing (not in a good way!) hot flushes ; dripping like a tap many times a day. 

I decided to start walking and initially I was barely able to walk 5 minutes slowly. Now I walk more than 30 minutes at a decent pace. I also had my bloods checked and it turns out I was low on vitamin D and ever since I started taking the supplements, I feel much more energetic. For the last 3 weeks I have not needed these extensive naps anymore which I am very glad about. I have even got a gym inductIon session booked. Hopefully that will help with muscles and stamina.

 

I am just starting to feel a bit like my old self again and even my face looks more like it used to. It was still a bit swollen but that went away gradually. 

The hot flushes are still a bother but I drink a lot of peppermint tea and that seems to help a bit. I am also contemplating acupuncture. 

 

I am so glad to see progress of the group. Remember when we all started and it seemed this would go on forever? We’ve been real fighters. 

 

Oots

Member

Re: April 2019 Chemo Starters πŸ’–

Glad to hear we all seem to be moving on.

 

I'm half way through radiotherapy and, so far, no Ill effects.  Just tired with all the travelling! Interested to hear about all the different creams. I was given moisturiser to put on twice a day and steroid cream once a day. If I need more I just have to ask.

And as for cover ups! Well, a couple of sheets of white paper and that's it. It gets quite cold in the room too! 

 

Getting to recognise a number of people , seems to be more men than women.

 

Bramley, I was so pleased (sorry!) to read about your slow hair regrowth. Mine isn't showing any signs at all 5 weeks post chemo. Just have to wait I suppose..... at least I'm not alone. Thank goodness I like my wig!

 

However, there have been days this week when I have felt so much better. Haven't really been myself since March. I'm sure many of us are the same. Sure, I'm tired, nails are shot to pieces, feet are numb and tingly, joints are sore (letrosole se) but I FEEL well........

 

Best wishes to you all.

 

Pollensa

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Nik Nak and Debi

 

It's a bit quiet on our thread these days but I guess some of our ladies are now getting back to their normal lives again and don't want to look back. Who can blame them either! 

 

Nik Nak, glad you have your dates for radiotherapy now.  The last phase of active treatment.  Debi, hopefully you can start soon too.  I wonder how they calculate how many sessions each of us need for radiotherapy.  I'm having 3 weeks (15 sessions) but it sounds like you are both having 15 sessions + an extra week of boosters.  When I asked my oncologist about boosters he discounted it and said it wasn't necessary or appropriate in my case.  I was surprised as the chemotherapy didn't achieve a complete response and 3 out of my 20 lymph nodes were also positive.   Oh well I guess we can only be guided by the medical professionals.

 

First week of radiotherapy has gone well.  It feels so easy in comparison to chemo.  No pain or side effects so far although I know it's still early days.   I'm applying pure aloe vera gel (from Holland and Barrett), waiting for it to try and then Aveeno (extra dry skin, unscented) on top.  Radiologist said it would be good to put the gel on first to soak in and then the Aveeno on top to moisturise.  So far no changes to my skin but again I appreciate that it's still early days. 

 

Glad to hear that your hair is growing back albeit grey and white!  It's so weird isn't it.  I can still see my scalp particularly at the back of my head but I had fine hair before diagnosis so I'm not expecting a thick crop to come back.  It's definitely not even growth.  I definitely want to dye my hair before I return to work in December if I have enough by then!  I've read that you need to be quite careful with hair dye after chemo so I think I may try an organic one stocked in Boots:  https://www.boots.com/its-pure-organic-herbal-hair-colour-natural-brown-10266480.  I don't suppose anyone has tried it or has any other recommendations for hair dye after chemo?  Don't want it to fall out when it has taken so long to start growing!

 

Enjoy the rest of the weekend all! xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi

Yes, I’m having 4 weeks radiotherapy in total with booster where the lump was. As for hair I don’t understand why it’s so grey. It’s upsetting enough when it falls out but I guess I should be thankful it’s growing! Have you had any pains in your legs at all?? 

take care & I hope you get the call soon. Are you getting 3 little tattoos where the beams will go? 

Nicola x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi

 

I saw my consultant today and i will get a call in next couple of weeks for my planning app. and CT scan.  I will be having 3 weeks of radiotherapy and a week of booster sessions.  I hope they ring soon, i just want to get started.  NikNak5 are you having booster sessions? 

My hair is growing back grey/white too and i think it could be coming back curly!  I still wear my wig in public.

take care all

Debi x

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi & Bramley 

 

I had my CT scan yesterday & my start date for radiotherapy is 11 November & I will finish on 11 December. I’d like to start now to get it out of the way, it’s such a long process. Glad to hear your seroma has cleared up Debi & hope your first radiotherapy went well Bramley. My hair is coming through really thick which it was before but like you Bramley it is so grey, I’d go to say white in some places when before cancer/chemo I was dark brown & had never had an all over color in my life. I’m still wearing my wig in public & a woolie bobble hat indoors as my head & ears feel the cold. Keep smiling, we are getting there now x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi

 

Glad the seroma has finally subsided and hopefully your BC nurse can put your mind at rest about the small hard bit.  I think we will always worry about any lump, bump etc in the future after a cancer diagnosis.  Sounds like you are doing some nice things too with aromatherapy and the look good feel better course. I was amazed how many lovely things they give you on that to take away.  Let us know when you have your dates to start radiotherapy and how many sessions you need. 

 

I'm doing good although feeling frustrated waiting for radiotherapy.  I actually start tomorrow and I can't wait to get going.  It will be nearly 16 weeks post chemo for me to start radiotherapy which feels like a lifetime.  I'll have 3 weeks of radiotherapy so will finish on 8th November.  I've booked a holiday to the Canaries for mid November which I'm really looking forward to.  It's been a long journey through treatment so it will be nice to finally get away to the sunshine.  My hair is still hopeless and I'm still wearing a wig in public.  It's definitely growing but oh so painfully slow and so grey!  I can't believe I was a brunette before diagnosis! 

 

Hope everyone else is doing ok?  xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Everyone

 

Haven't heard from anyone in a while, i hope you are all doing well.  I just thought i would update you all on my progress.  I have now got an appointment to see the radiotherapy consultant (Thurs 24th), my seroma under my armpit has finally subsided although there is still a small hard bit still there so i think i will see my breast care nurse so she can just check its nothing sinister. 

I went to see a nutritionist at Haven and she gave me some really good doable changes for my diet.  I have been to one of the Look good feel better sessions which was really good with all sorts of goodies to take home.  This week i have an aromatherapy appointment at the Haven centre so i am looking forward to that too.

Love to all of you

Debi

Highlighted
Member

Re: April 2019 Chemo Starters πŸ’–

Hi NikNak5

 

I felt exactly the same when i came out of my meeting after surgery results, i too had clear margins and was told that all the cancer had been removed, but i still felt flat, worried and anxious that they had missed something.  I cried when i got home but it wasn't tears of joy, it was more tears for the unknown.  i am currently waiting for an appointment to see radiotherapist, i am 5 weeks post surgery.

 

Debi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Nik Nak - I can completely understand why you are feeling so flat and confused.  When you are told there are clear margins you hope that the surgeon has removed all the cancer.  A mastectomy sounds very drastic after a lumpectomy with clear margins and a happy surgeon?  I completely understand there are no guarantees with breast cancer treatment but why would they recomend a lumpectomy and then afterwards give you the choice to have a mastectomy just for total peace of mind.  Can't quite get my head around it really.   If you apply this theory, all of us having or had lumpectomy's are in the same position.  If it makes any difference I would also make the same decision as you and go for radiotherapy to kill off any rogue cells that have somehow survived chemo and surgery.  Sending you a big hug xx

 

Lynsey - hope you are feeling less nauseous and your appetite has returned after the Zolodex? I've not had my first one yet as I needed a tooth extraction.  Due to start at the end of October. 

 

Hope everyone else is doing well xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Ladies

 

i got my results yesterday following surgery 2.5 weeks ago. I cam out quite flat & it wasn’t how I imagined it to be. The surgeon is happy with the op & outcome good, clear margin etc. but then said a cell could of jumped the margin so to speak so radiotherapy or for total piece of mind you could opt for a mastectomy but if we do a mastectomy we will probably find nothing - it’s personal choice. Now I’m scared that I still have cancer in my breast but I’ve opted for the radiotherapy. I imagined I’d come out of that meeting tripping the light fantastic but I came out & just felt numb & cried. Anyone else feel the same?? 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone! 

Hope you’re all doing well? 

Ive got a question regarding zoladex...has anyone else who is on it had a loss of appetite? Or nausea? 

I got my first subcut injection 2.5 weeks ago and for the past week have been feeling squeamish and not hungry. Food doesn’t taste great. 

Just wondering if anyone else has had similar? 

Thanks! Lynsey x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Susie B and all TN ladies,

 

im sorry that you seem to be getting a negative response re Zoledronic Acid.

i was told that i would be having this every 6 months for the next 2 years at my first appt with my chemo dr.   This is also my second TN in 2 years so dont know if this is why im having it and also im 69....

 

re gene testing i had this done automatically.  Again might be age related plus the 2 doses of tnbc , but i do have bc on both sides of my family and a 39 year old daughter.

Was relieved when the result showed no BRCA genes....

 

do let me know the outcome .  Keep pushing.... tc  mini mad xx πŸ’–πŸ’–

ps ive finished my chemo now πŸ‘πŸ₯³πŸ₯³πŸ₯³

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you for your reply Bramley. I'll have a look at the information.

Susie B xx 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Susie, just to reply to your question on gene testing, I think each NHS trust has their own criteria for approving gene testing for breast cancer.  It's worth asking what the criteria is at your hospital.  I didn't qualify on the NHS criteria but as my Mum also had breast cancer I decided to pay for the gene testing privately.  I used a US company (much cheaper than getting it tested in the UK) and I was really happy with the service I received.  I put a post under the genes and breast cancer thread with more information just in case this is something you want to pursue for your own peace of mind (you will need to scroll down a bit to get to the original post):

 

https://forum.breastcancernow.org/t5/Genes-and-breast-cancer/Private-gene-testing-for-BRCA1-and-BRCA...

 

 

 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi TN ladies

 

Regarding the Zoledronic acid I asked my onc about when I started my 2nd lot of chemo after surgery. Can't remember if I mentioned here I was on a trial, chemo FEC, surgery, chemo TC, rads. At the time he just said we'll talk about that later. When I asked again prior to my 4th and final chemo about Zoledronic acid he said it wouldn't be suitable for me as I was not receiving meds for hormonal bc. At least I think that's what he meant. English is not his first language but he understands it well. My trials nurse who attends all my onc also agreed with him. I didn't challenge this at the time having already decided I would contact my bc nurse, not the trials nurse, to double check. Anyway I rang her and she passed my concerns on to the appropriate person who the rang me back. When I told her my concerns and explained that I was TNBC, she said "We don't normally give Zoledronic acid in TN cases but I'll have a word with an oncologist and get back to you." Not exactly what I was expecting to be told. Anyway I told her what I had read on both this site and the Cancer Research UK website. Upshot is I have an appointment with the female onco that I have seen a couple of times and trust on 27th Nov after rads have finished. I have been told to see my dentist before then.i am now keeping my fingers firmly crossed🀞🀞.

As for genetic testing I've not had that as there is no bc within the close or wider family. Purely out of curiosity I wouldn't mind being tested but wouldn't know how to go about it. 

Like you I had  a lumpectomy and full ANC. 9 out of 14 nodes were positive which came as a huge shock for me. 

I intend to go armed and ready when I see the onc with all the information on hand incase I am told it's hospital policy not to give the Zoledronic acid to us TN ladies. You may wish to do the same.

As you know there is not much out there for us TN ladies, but research and trials are taking place. It just seems a shame some of us have to fight to get what is available.

My biggest fear now is recurrence but when I read about people like yourself who have had a return visit of this terrible thing and getting treatment and getting through it again it gives me hope for the future.

Please let me know how you get on with your next onc appointment. I hope you get some good news regarding the radiotherapy, there's no harm in asking for a second opinion. Leave a ❀ then I'll look for your reply.

All the Best, Susie B xx