Palbociclib

Hi Kath1968

sorry to hear the news that you cancer has returned I was diagnosed in November 20 with regional recurrence after 11years in remission 

i had a mastectomy followed by chemo and rads then on hormone tablet for five years  with my primary 

the recurrence has come quite high under my collarbone and is inoperable so I’m on palbociclib and letrozole like yourself ,I’m starting my third cycle tomorrow and I must say it’s been very doable,no aches ,pains nausea,just a headache around the ninth day of cycle and a couple of mouth ulcers query thrush but actually ive felt very well.

I was quite nervous initially when I first started but I’m feeling a little more relaxed as time goes on.

Im sure you will be fine and your oncology team will be there if you have any issues ,I have spoken to my support team  regarding the oral thrush and they were very good and reassured me that it was normal to get these problems.

Take care and if you need to chat anytime I’m always here for you .

best wishes Chris xx

Hi Kath1968, I found this forum so helpful before I took the plunge and joined! I started my 3 rd cycle too last week ( 18 years post original diagnosis/ surgery) and amd amazed at how well I feel- had to restart some pain killers in morning as my back is painful but am due my Zometa infusion in February so think this is something to do with that?? Hopefully you will feel better on this combination as we do xxx

Dear Kath

Sorry to hear cancer returned.

I am on the same combination of drugs as you (letezole and Palbo). I had breast cancer in the mid 1990s in one breast (surgery/radiotherapy/drugs) and then had cancer in the other breast in 2011 (treated by mastectomy and 5 years of Anastrozole).

I was diagnosed with secondary breast cancer early in 2020 (inc bone).  Currently I am midway through cycle 11 and so far tolerating this combination of drugs well.

I find Benzydamine  mouthwash helps with mouth/tongue ulcers I get at times.  I  had some issues at the start with having to delay a cycle on a couple of occasions until the white blood count improved.  I've experienced hair thinning - but accept it as a trade off for what the last CT and Bone scans show is a stable position with the cancer not spreading.

The list of potential side effects is always a bit frightening!

Hi im like you I was clear for 5 years exactly all bar a week ... ive now metastatic breast cancer with spread to liver and spine .. I also have a pleural drain in as I have fluid on my lung and I drain every 4 days  ... im on palbociclib and letrozole and im now about to start my 6th cycle ... I feel great and only had bad side effects the first 3 cycles .. I had bad cystitis and mouth ulcers but thankfully from cycle 4 I've had none ...ive weight gain but I guess that's a small price to pay for feeling good again .. it would also help if I wired my jaws shut lol .. i hope you find the treatment as kind as I have xxx

Hi Kath

I had primary breast cancer in 2007 followed by double mastectomy, chemo & radiotherapy then 5 years of anastrozole. I was then diagnosed with secondaries in pelvis,& spine in January last year. I've now been on palbociclib & letrozole with monthly denousanab for a year. I haven't had many side effects and it seems very manageable. The side effects I've noticed are hair thinning (I am using Herbal Essences bio shampoo with argan oil & that seems to have helped). I also suffer with constipation & dry itchy skin. I am on the lowest dosage 75mg if palbociclib as neutrophils struggle to recover each month.

Hi

• I was on Palbociclib form about 3 yr, having had primary breast cancer in 1994, has a mastecomy alo in 1994, followed by 10 yrs on Tazmoxifen. Then 4 yrs ago I was diagnoised with secondary Breast cancer, I was taking Palbociclib alongside Anastezol and monthly demosumab injections. The Palbociclib was brilliant and I had no side effects, I was on the lowest dose as my white blood cells kept dropping, but apart from that it was brilliant.
• Unfortunatly after 4yrs of taking it, the cancer has spred tp my live and pancreas, so now on Chemo. 
• I do hope it all goes wel for you and you get few side effcets if any, stay positive and enjoy life.

All the best

Sapphie

Hi all

I haven't been on this site since lockdown last year. Tbh was do low felt easier to keep my doom an gloom to myself.

I original diagnosed February 2012 had lump ectomy an other book resized only to then discover 1cm lump in that tissue. 3years later after 10 diopsies had double mastectomy.  Life went back to near normal. Until October 2019 had jumpy leg.  After scans found ovarian mass which after removal 8cm mass turned out to be breast cancer cells.  So November 2019 I started palbociclib an letrezole.  I had stops an starts as my levels were up an down but as lockdown had started there was no one to see...all phone calls.

I am now on 75mg palbo an letrozole.  I know its the lowest dose an that worries me.  I'm on cycle 15  an use mouthwash an cover bad ulcers with iglu which helps.i get tired but other than that I'm fine.

My mental health on the other hand...not so great, covid has had me shielded an house bound for all but 4 weeks in summer where I saw my children an grandchildren . 

Anyway what I'm trying to say is our anxiety isn't all about the cancer some of it is the situation we are all in.