Joanne 66, thank you for your message. That is so positive, I’m really pleased for you and wish you lots of luck for your operation. It’s brilliant that you have responded so well to treatment 😊
Daisy 1257, that’s good to hear. My consultant did talk to me about it near the start but I’ve heard nothing else since so I will definitely follow this up at my next appointment. I have two 6 year olds so definitely want to know if there is anything there that should be known.
sending you both lots of positive thoughts x
Good luck with your op next Wednesday, I hope everything goes well for you.
Kat, just to let you know I spoke to my oncologist yesterday Re genetic testing. He said that because I'm under 40 he is certain I will meet the criteria to be tested. He is going to refer me. He did say its quite a slow process 2-3 months for results but if positive it can impact the treatment plan further down the line. He did stress it would not change my current treatment.
He said they will post me a questionnaire and then do bloods which will be sent to Cardiff.
I am going ahead as I think it's worth checking.
Hi Kat & Daisy
Hope your both well.
As I said in an earlier post I have tolerated the ribociclib and letrozole very well, my breast cancer started with a sore no lump, it was like a sweat rash under the right breast that openened up and liooed awful, it’s in lymph nodes and also a patch on pelvis which they are now saying isn’t suspicious. Onc says I’ve responded well to treatment as the sore has all healed , she referred me to surgeon who I seen on Thursday and he is going to operate this Wednesday so I’m having a right hand side mastectomy and lymph node removal.
So stay positive as last August when I was diagnosed I was advised it was in operable but it just shows if you respond to treatment it opens up other doors.
Sending love to both of you xxxx
Thanks Daisy 1257, I’d be interested to hear what they say.
Yes do have a look, I had reflexology too which really helped with some of the side effects.
oh wow, it does come round so quickly doesn’t it, it seems like you’ve just had a scan. I’ll send lots of positive thoughts your way for more good news on this one. X
I will let you know what I find out about genetic testing tomorrow once I have spoke to consultant. It will be interesting to compare our responses.
I will take a look at macmillan for alternative therapies - thank you.
I've just been given my next ct scan date of 26th July! It's come round so fast. Now the nerves will start!
Take care, speak soon
Daisy that’s great that you are tolerating the treatment well. Thanks for the information on the report too, I will have a look at that. I have asked about genetic testing but not heard anything yet.
I feel really quite well on the treatment overall which is great. Just my blood levels that I’m struggling with. Going back today so hopefully they are up again and I can get back on it tomorrow.
I have seen the alternative therapies lady at my Macmillan center and she put seeds in my ear (they are just on plasters) and they stop my flushes pretty much altogether - it might be worth asking about.
I hope you keep feeling well on the treatment. It’s definitely good to talk to people on the same treatment and people the same age too.
take care x
Like you and Joannen66 I am also on Ribociclib, letrozole, zoladex and Denosaumaub. Im starting my 5th round on Monday providing bloods are OK. So far they have been.
Again like you I started with rib and back pain after 6-7 weeks I could barely walk and found out I had fractures on the vertebrae.
I feel pretty well on the treatment and only seem to suffer from mild flushes which I can live with as long as treatment is working. Kisqali released stats from their research last month as they now have 5 years worth of trial data and it was very very encouraging to read.
How are you finding the treatment?
As I have been diagnosed quite young (37), I am currently looking into genetic testing. My consultant is ringing me Friday with some info on it.
It's great to chat with others on the same treatment. Good luck with your scan results on the 20th.
That’s good to know about your infection as I’m so worried about that happening so pleased to know they dealt with yours well even if it did involve a hospital stay.
I was diagnosed in February (aged 39), I had awful pain in my back and rib for a long time and after many trips to doctors and a and e a physio finally sent me for an x ray and a scan and saw it on my spine. After further investigations they found the primary in my left breast, some raised lymph nodes and a spot on one rib. There is also a bit somewhere else but I’m not clear as to where - it’s the sternum area but not in the sternum I don’t think. It was all too much to take in to start with but I will clarify that with them when I get my scan results on the 20th.
It is definitely good to talk to other people in the same situation. I am pleased you cope with the treatment well. I’ll start my 4th round of ribociclib this week if my levels are better. 🙂
Hi Kat, sorry took so long for me to reply I’m currentl on my 10th round of ribociclib and I do tolerate it very well, I did end up in hospital for a week as I picked and infection up in January but antibiotics sorted that out.
i was diagnosed in August last year I have it in right breast and lymph nodes in right arm and also in left arm, they did say I also have a patch on pelvis but are now saying they don’t think that’s suspicious.
when we’re you diagnosed? And do you mind me asking where you have it.
nice to talk to people in same position
Take care xx
Oooh, get onto them. That is a new build and is impressive. My friend pops in there. He has prostate cancer. The manageress spent some time at our Maggies during her training and I liked her very much. X
Hi, my main source of support is the SBC group at Maggies in Newcastle. We meet monthly again, but during the lockdown we formed a zoom group so we could see each other. The manager at Maggies is also our lead nurse. I’ve accessed such a lot of help from them. X
Thanks for taking time to reply Ann. It’s good to hear other people’s experiences. I know there are other medications I can move onto, I’m just hoping I can stay on these for a while as I feel ok on them. It’s good to hear about the support group too, I didn’t know things like that happened. X
Hi Kat, i suspect Palbo is the culprit, it was with me. It took a year to get my dosage and rest period correct and then I motored on happily for three years. Unfortunately , like yourself, my neuts began to drop monthly until my Onco decided it was no longer safe for me to continue. Palbociclib is a bit of a belts ‘n’ braces med and works with Letrozole, which is your real performance hormone blocker. I know it is quite worrying, but your MDT will keep you safe, and there are plenty of other meds available for you if needed. The neutrophil question is asked frequently of our senior Onco at our support group meeting and he always says that there is little he knows that encourages or improves them, which is a bummer! Just one of those things, but eating healthily can only be a good thing. Best wishes. Ann x
Liz, thank you so much for your reply. Greens seem like the way forward! It’s definitely good to know that others have been through the same and your news about stable scans for so long is fantastic, thank you for sharing that. X
Thanks Joanne 66. I eat quite a bit of raw spinach but will up my green veg and berries this month too and see if it helps.
Last month mine dropped to 0.75, a week later they were back to 1.45. This month on a lower dose they dropped to 0.76 which doesn’t make a lot of sense to me!
Thank you, I am nervous about the scan but hopefully it’ll bring some positive news 🤞 This is all still so new and such a shock.
I feel a bit better today as the consultant was not worried about my levels dropping and delaying again, he actually saw it as a positive sign so that made me feel a lot better.
How long have you been on ribociclib? X
Hi I am on palbociclib which can have the same effect on neutrophils been on this for 3 + years and scans 3 to 4 monthly show things stable. Initial dose was 125 mgs then lowered to 100mgs as coubts were low now on lowest dose 75mgs for past few months . Neutrophils been OK on the 75mg dose. I have had treatment delays for a week on a few occasions. Your neutrophils can change on a daily basis I usually sit just above 1 but have been 0.8 or 0.9 when treatment was delayed . I try to eat healthy fruit veg esp greens plus take vit d and b12 supplements to try to help. Sometimes it seems like a hit or a miss with bloods. Others on here have said their dose is adjusted or days off treatment made longer and still work . Palbociclib is daily and 3 weeks on and a week off but some do 2 weeks on 2 off I think. Sending love hugs and positive vibes xoxo . Liz
im on ribociclib letrozole and zoladex.
i normally get my blood done on the Friday then pick my tablets up on the monday, my neutrophils can sometimes be under one, but then when I get them repeated they tend to go to anywhere between 1 and 1.4 so I have never had mine delayed. How low have yous been ? My onc allways say 1 or above is fine.
I know they say there is nothing can eat but the last time I ate raw spinach in salads lots of brocolli & Kale and had lots of berries and they were the highest they have been.
i wish you well with your scan also xx
I am on ribociclib, letrozole, denosumab and prostap.
My neutrophils were fine on the first round but low on the next two rounds so my treatment was delayed by a week each time. This time my dose was lowered so I took 2 ribociclib tablets a day rather than 3. Just been for my bloods today and my neutrophils are as low as they were last time when I was on a higher dose. They have delayed my treatment by a week again but said they need to speak to the consultant about what he wants to do. I am really worried now and not sure what he might say. I am due to have my first scan since diagnosis next week too.
Has anyone else been a similar position? I really thought when they lowered the dose that I would be ok to carry on as normal.