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New diagnosis

35 REPLIES 35
Clairew
Member

Re: New diagnosis

Hi Lou, how do you feel after the 3rd fulvestrant?  I started my regime yesterday, denosumab, fulvestrant and palbociclib. Fulvestrant stung a bit, don’t want to speak too soon but not too much of the original pain at the mo but feel bit tired but that could be general. 

I am still waiting for them to book the middle fulvestrant which should be on the 20/8 , they seem to have missed it out.  I’m sure they will fit it in. 

Hope you are having a good weekend xx

Clairew
Member

Re: New diagnosis

Hi Daisy

thats brilliant you had shrinkage so soon.  I can cope with CT scans, it’s the dreaded MRI I don’t like. 

Yes I saw something about regaine, looks good. I did buy some shampoo today with biotin and bamboo in to start using now rather than what I do have .

thanks catch up soon x

Daisy1257
Member

Re: New diagnosis

Hi Claire

Thanks.

I was diagnosed early March this year and started treatment mid March. My first scan was done 8 weeks after starting treatment as they messed the booking up, but it showed shrinkage so I was pleased with that. The scans should be every 12 weeks and I have a ct scan. Last week was my second scan.

Yes I try not to wash my hair too much, I was looking at one of the regaine products which looks good. It's for thinning hair.

Good luck with your treatment, try and take one day at a time and I'm sure you will be fine.

Enjoy the weekend

X

Clairew
Member

Re: New diagnosis

Hi Daisy1257

thats brilliant news, I’m so pleased for you xx. Makes it all more tolerable.

i see a lot of comments saying that the tumour markers aren’t too relevant, my oncologist didn’t tell me mine as he said they fluctuate , perhaps they aren’t that accurate maybe? But good news is for you there is noticeable improvement 😁

What type of scan do they do? Also remind me how long you have been on treatment.

i have been trying to drink more water , I’m not the best at it but making myself. 

Oncology nurse said not to wash hair every day, but I struggle with that but will heed advice and just looking at hair shampoos that boost growth etc, not to wash it more but when I do it will give it a boost as well hopefully.

I’m only a day into treatment but glad it’s started and will pace myself sensibly.

have a good weekend xx

 

Daisy1257
Member

Re: New diagnosis

Hi Claire

I had really good scan results! There has been improvements in the liver and also in the bone. The bone is starting to heal too.   Lymph nodes are still clear too. Next scan on 3 months.

I had bloods for tumour markers but don't get results until Monday.

Great that you are having minimal side effects. I have minimal side effects on my treatment too, I get the odd hot flush and my hair is thinning but OK apart from that.

I do make sure I drink 4 pints of water a day and I think that helps.

Good luck with your treatment.

X

Clairew
Member

Re: New diagnosis

Hi Daisy1257

how did your results go? X

i started denosumab, fulvestrant and palbociclib today 🙂 fingers crossed minimal or no side effects. Trying to distract myself and have a quiet low key house work weekend. Xx

 

Daisy1257
Member

Re: New diagnosis

Thank you Claire, I will let you all know. Results are on the 3rd Aug. X

Clairew
Member

Re: New diagnosis

Hi Daisy1257

 

good luck for your scan on Monday, please let us know how you get on, I’m sure all will be good. Claire xx

Daisy1257
Member

Re: New diagnosis

Thank you, I'm keeping everything crossed! X

Loulou1007
Member

Re: New diagnosis

Good luck with your scan on Monday Daisy1257 Lou x

Clairew
Member

Re: New diagnosis

Hi Louise, I’m in Bristol. Well outskirts of. Thanks for your message. I thought I was to have my injections 2 weekly for 1st three too but doesn’t look like it. Good luck for the next injection. Let me know how you are after that one. 

Yes, oncologist was positive with my treatment plan too, they must know. Yes very very sunny and too hot here , sat right in front of my fan 😀.

 

claire xxx

Loulou1007
Member

Re: New diagnosis

Hi there Claire

Glad you MRI is now out of the way :-).  I too had a list of treatment appts which last until Nov 2021, there was mention that the nurses at my doctors surgery may be able to administer all the treatment after Nov we will see its no big deal for me to go to the hospital for treatment. My first 3 fulvestrant was 2 weekly (1.7.21, 15.7.21 and 29.7.21) then they go to monthly. I wish you well when you start treatment on 6.8.21 and hope this eases your pain. I am trying to be positive as Oncologist did say he expects this treatment to work well for me.

Hope you have sun where you are and have a nice day.

Lou xx

Clairew
Member

Re: New diagnosis

Hi Louise, I am pleased your pain has gone. That’s good to know. I managed my mri, I am a bit of a whimp with mri I am afraid. It was a slightly bigger scanner, 40 mins for the whole spine but done now out of the way. Phew! 

I have just received all my bloods and injection appointments up to Feb 2022, they are monthly , I thought the oncologist said first 3 were 2 weekly. I suppose they are correct.  Roll on the start now. 

Yes I see what you mean by lots of appointments, looks like the oncology catch up will be over the phone unless they need to see me too.

thanks for the message 

Claire xxx

 

Loulou1007
Member

Re: New diagnosis

Hi Claire

Thank you for your reply. When I was going through all my blood tests then scans I didn't have any back pain this was back in April. My back then started to ache end of May early June. Following starting treatment I have had no signs of any further back pain so yes the treatment has helped with this. It will be good to get the MRI out of the way today so hope that goes as smoothly as possible. Like yourself before my treatment all started I had so many appts, scans but that has since calmed down soon my treatment goes to one day per month. Take care and always good to catch-up Louise xxx

Clairew
Member

Re: New diagnosis

Hi Louise

Sounds good for you so far, fingers crossed. No, I have a whole spine mri this morning, can’t wait for that to be over😕, my least favourite scan.  I have bloods on 28/7, fulvestrant and Denosumab together on 6/8, can’t wait to start as hoping the pain will ease. Then Palbociclib starts on 9/8.  I have heard that about the fulvestrant injection, thanks for reminding me, at least I know what to expect. Are you in pain at all with your mets? I think I recall the oncologist saying my pain will ease as treatment begins. It’s there but sometimes worse than other times, possibly depending on tasks I do. Keep me posted and likewise I will let you know. Catch up soon, hope your blood test results are positive.

claire xx

Loulou1007
Member

Re: New diagnosis

Hi Claire

Following my 1st treatment on 1.7.21 of Denosumab and Fulvestrant I felt good this had got anyway. I found my hormones to be a little all over the place and have had huge night sweats apart from that I am coping well I believe. I have been taking Palbociclib for 3 weeks so next week have a week off, my Hb and calcium levels have dropped a little but they are keeping an eye on those. I have a further blood test later this week. The fulvestrant injections sting a little and take a while for the nurse to administer into me, apparently they have to inject slow into patients.

Have you started your treatment yet? If you have how have you got on?

Louise xxx

Clairew
Member

Re: New diagnosis

Hi Louise, how are you feeling so far with the injections? Have you started the Palbociclib yet? I am hoping not too many side effects for these drugs. My oncologist said I should be able to tolerate them due to coping with the chemo in 2015. Happy to message on here to you or via another method if that suits you too.  There are some lovely helpful people on here I must say, xx

Clairew
Member

Re: New diagnosis

Hi Louise, thank you for your message, yes would love to keep in touch that would be great.  It is exactly the same treatment with my added zoladex I am already on, oncology dr said I could stay on it (I am 53 soon to be 54 so periods could start again and didn’t really want that at the mo). 

That sounds similar to me, he said start in about 2 to 3 weeks but it will be 2 weekly then onto 4 weekly after initial blood checks etc. Palbociclib is same as yours too. It is really hard but he was really positive and having the plan helps. He also said scans at 3 monthly intervals.

i look forward to hearing from you, xx

Loulou1007
Member

Re: New diagnosis

Hi Clare

Sorry to hear about your spine mets I have 3 spots on my spine which was diagnosed in June following scans etc. I started my treatment of Fulvestrant, Denosumab and Palbociclib on which I think is the same as your treatment. My first treatment took place on 1.7.21, next of only Fulvestrant is 15.7.21 then 2 weeks later (29.7.21) Fulvestrant and Denosumab whilst taking the Palbociclib for 3 weeks with a week off every month. I feel better having started treatment. It is devastating news and I have not yet come to terms with this. I hope you are coping ok and maybe would be good to stay in touch as similar mets and treatment. Louise x

Clairew
Member

Re: New diagnosis

Hi Liz0418 I have had my appointment and don’t feel so anxious now. I have a treatment plan in place of Palbociclib, fulvestrant , Denosumab along with my current zoladex. So I will drop the letrozole. Consultant said this will be 2 to 3 weeks as all the appointments need to be sorted out, but him and the b cancer nurse were lovely and he was confident I would tolerate the drugs well. So feel better now things are in place. Any tips greatly received. I think I will be checked every 2 weeks to start with xx

Clairew
Member

Re: New diagnosis

Hi Michy1 I have had my appointment and don’t feel so anxious now. I have a treatment plan in place of Palbociclib, fulvestrant , Denosumab along with my current zoladex. So I will drop the letrozole. Consultant said this will be 2 to 3 weeks as all the appointments need to be sorted out, but him and the b cancer nurse were lovely and he was confident I would tolerate the drugs well. So feel better now things are in place. Any tips greatly received. I think I will be checked every 2 weeks to start with xx

Clairew
Member

Re: New diagnosis

Hi catokitty I have had my appointment and don’t feel so anxious now. I have a treatment plan in place of Palbociclib, fulvestrant , Denosumab along with my current zoladex. So I will drop the letrozole. Consultant said this will be 2 to 3 weeks as all the appointments need to be sorted out, but him and the b cancer nurse were lovely and he was confident I would tolerate the drugs well. So feel better now things are in place. Any tips greatly received. I think I will be checked every 2 weeks to start with xx

Clairew
Member

Re: New diagnosis

Hi Daisy1257

 

I have had my appointment and don’t feel so anxious now. I have a treatment plan in place of Palbociclib, fulvestrant , Denosumab along with my current zoladex. So I will drop the letrozole. Consultant said this will be 2 to 3 weeks as all the appointments need to be sorted out, but him and the b cancer nurse were lovely and he was confident I would tolerate the drugs well. So feel better now things are in place. Any tips greatly received. I think I will be checked every 2 weeks to start with xx

Clairew
Member

Re: New diagnosis

Hi Shi

 

i am probably being daft but where do I find the someone like me option please? Xx

Clairew
Member

Re: New diagnosis

Hi Liz

thank you for your message. Good to hear you are doing well, sounds like the treatments are manageable as I work full time like a lot of us on here and hoping to carry on that way. I think once I get treatment plan it will focus me more. I will let everyone know once I have my appointment tomorrow. Thanks for the positive vibes, this site has really helped me.  Xxx

Liz0418
Member

Re: New diagnosis

Hi Claire I am 3 years in with secondaries in both lungs base of spine and pelvis 14 years after primary bc . I am on palbociclib letrozole and 3 monthly bone infusion.  Totally understand how you are feeling initially as it's a minefield. I have scans 3 to 4 monthly and the treatment us keeping things stable. As everyone on here says new treatments and it's a treatable diagnosis even although it's never curable lots of people living so much longer. Thinking of you and we are all here to support each other . Liz sending love hugs and positive vibes xx

Clairew
Member

Re: New diagnosis

Hi Michelle

thank you for your messages, really helpful , it’s just the unknown but all these messages and comments help to know what’s ahead even though I appreciate everyone is different. Hope you are doing well. Xx

Michy1
Member

Re: New diagnosis

Hi Clairew,

Also I had an ablation(removal of tumour;not curative) and cement technique carried out on my mets in the hip joint which I believe is carried out on spine mets too. It lowers the risk of fractures occurring in the future and reduces pain. 

X

Michelle

 

Michy1
Member

Re: New diagnosis

Hi Clairew,

I have mets in my pelvic bone and just got my treatment plan of letrozole and palbociclib on Friday. I have had 3 months of tests and a stay in hospital. Know you will feel so much better when you get your treatment plan. 

X

Michelle

 

Clairew
Member

Re: New diagnosis

Hi catokitty 

thank you very much for your reply.  Sorry to hear your mis diagnosis in the beginning that must have been very difficult for you.  This forum is brilliant and everyone seems to be so helpful and informative. Yes it does seem like appointment after appointment at the moment.  Feels like I am back in the primary bc days. I have a full spine mri on 20th, yet my oncology appt is on Monday.

i will post back on here once I have info from that. Glad to see you are stable with your scans too.

thank you xx

catokitty
Member

Re: New diagnosis

Hi   Good luck for Monday.  I have mets in my spine at L2 but unfortunately my  GP insisted the pain was sciatica which complicated matters and I eventually had a fracture before diagnosis.  Once that was fixed with surgery I was started on Fulvestrant, Ribociclib and bone strengtheners in September 2019 which I believe is pretty standard treatment.   My scans have been stable since then.  I am ER positive HER negative and according to my oncologist there are plenty of treatment options and many women survive for a long time on treatment.  There are also new drugs in the pipeline.  Initially there are lots of appointments but this soon settles down.  I go every four weeks for bloods and injections but apart from that I get on pretty normally and enjoy life.  All the best xx

Clairew
Member

Re: New diagnosis

Hi Shi

Thank you for your message. I will do.  It’s another journey to go on but really good here to see others comments and very helpful.  I will be more settled and focused one I get my treatment plan on Monday.

thank you and enjoy your weekend 😀xx

Clairew
Member

Re: New diagnosis

Hi Daisy

thank you for your reply, so good to see you are doing so well.  It gives me good insight to what I may be treated with and a plan. 

Of course I will let you know once I find out on Monday.  I am already on Letrozole and Zoladex so not sure if I will be kept on those medications or not. 

Fingers crossed for your next set of scan results. Let me know how you get on.

Enjoy your weekend xx

Daisy1257
Member

Re: New diagnosis

Hi Clairew

I'm so sorry to read about your secondary diagnoses and sorry to read you have been through this twice before.

Good luck with your treatment plan on Monday, I felt so much better once I had a treatment plan in place.

I am also ER positive, Her2 negative. My secondaries are in spine, ribs, pelvis and liver.  Although I was diagnosed straight to secondary. I am 37 and have two girls aged 5 and 7.

I'm on ribociclib, letrozole, zoladex and Denosaumaub which is a bone strengthener.

I was diagnosed in March this year and my first scan results in May were really positive, it showed the tumours in the liver were shrinking and bones were healing.  My next scan is the 26th July so getting anxious again.

This forum is brilliant and I have gained so much knowledge from the different posts. I know it's tough when your first diagnosed but please stay positive. There are so many drugs available now for secondary breast cancer. The best advice I was given was to take one day at a time and not to worry about the things you don't know.

I'm managing to live a fairly normal life with little side effects which is great. I get mild flushes but that's it.

Good luck for Monday and let us know how you get on.

X

Shi
Community Champion
Community Champion

Re: New diagnosis

Claire’s ❤️ Do please use the someone like me option snd also the ask the nurse option too ❤️ Breast Cancer Now can help and support you and I’m sure others will be along soon to share answers to your questions on the threads too ❤️💕💕Shi xx

Clairew
Member

New diagnosis

Hi.

I have been reading a few of the forums and getting really positive vibes off you all. 

I have recently been told I have mets to the l3 and l4 vertebrae, along with signs of it in pelvis and sacrum. I have my oncology appointment on Monday so I am hopeful for a good treatment plan then. I was just wondering if anyone had similar. I previously had 2 breast cancers 7 and 3 years ago both ER positive , Her negative. 

It’s very inspiring to see all the positives on here, obviously I am a little anxious at the mo.

thank you to anyone who reads this

🙂