New Drug Palbociclib

[funnyface]

Good luck Weemee! I don't know how I fought through 21 months of pain, but somehow I talked my self through it. Mostly bc I didn't want to throw away a life line! Keep plugging! You can do this! FF

[Weemee]

Thanks you and FF for reply. Spoke to my Gp. The suden menopause and side effects from Zoladex arw kicking in. She thinks my incease pain is mostly that. The hit flushed got worse at same time. So mentally and physically screaming. She started me on citalopram. Hoping to recommence Ibrance today and pray skin doesnt flare up. Thank you for your support xx

[funnyface]

Weemee, What drug are you on with the ibrance? I was on letrozole (femera)! I was in like instant pain in my knees. It was so bad that I almost had my knees scoped. I never thought about it being the medication, I thought I injured my knees while camping and walking on uneven ground. I had cortisone injections, no help! I did Sinvisc injections, worked for one day! MRI showed my knees were worn out! I have v one spurs on knee caps, a meniscus tear, and an ACL tear. My knees hurt some times but nothing like how they hurt on that drug. I even resorted to crutches. Then the pain seemed to settle after about 4 months. It still hurt but not as bad. I've been off letrozole for 3 months and basically back to my normal  pain. The pain I have is like before I took the drug. My knees have been touchy for years. They do need replaced. If I did something like bowling I would be screaming for days. As long as I don't do anything crazy they are tolerable. Talk to your Dr!! FF

[Stillhere]

I'm sorry you are in pain, can you phone for advice? I feel unkind in saying that I have almost no side effects from my trial drugs now apart from fatigue and thinning hair/eyelashes. I've just had a CT scan result on Thursday where I now have a 50% reduction in mets so this trial is working very well for me!

I did have quite a lot of nausea and diarrhoea for the first few cycles though so it wasn't all plain sailing, I almost felt like coming off the trial at one point.

I hope you start to feel better soon and all the early problems subside xx

[Weemee]

Hi thanks for reply. Just posted there. Its my week off inrance. Feel so down. Pain is awful. It was so good for 6 days. Now ribs are in agony again. Don't konwo if its not being in the Ibrance and a wee bit of a flare up. How are you on the trial drug. X

[Stillhere]

Hi Weemee, I've had a long break from the forum but I think you know that I've been on the PIPA trial with Palbociclib and Taselisib for over 14 months. I've never had any rashes but I know that this was the most common SE amongst patients on my part of the trial. I think a few people had to come off the drugs and the trial has gone forward with 100mg dose, not 125mg. 

I hope that your SEs get better with time, good luck x

[Weemee]

Thanks for your reply. And yes im mad with itch and got steroids cream its dropped my various component of blood work within two weeks. X

[funnyface]

Weemee, I did not have any rashes. Perhaps they could give you a steroid. I understand how you are feeling though. I'm on everimolus/exmestane and having problems with rashes and itching. They are talking about lowering my dose or putting me on a steroid. I go for scans and results next week, so we are going to see what the results are before changing anything. This itching is driving me crazy!! FF

[Weemee]

Hi therw. Did you have any skin rashes x

[Weemee]

Hi there did you have any skin rashes. I have no ther side effects. Will be devestated if i have to come off this. Im on 125. Thanks in advance x

[funnyface]

PMOL, I took pablociclib (called ibrance here in the states) for 21 months. I was more tired but it wasn't drastic. No hair loss or nausea. I did get extreme weakness in my legs. I never noticed how weak my legs were until about 9 months later in the Spring. I couldn't step up on a curb without help. I had trouble alternating steps bc my joints especially my knees hurt so bad from letrozole. When I realized my legs had got weak, I started exercising. This did not bring the strength back, but I lost no more. Since coming off of ibrance my legs are getting stronger. I can now step up on a curb again. I'm using my arms less and less pulling on the rails. Leg weakness has been a major complaint on bcmets.org. I would suggest leg strengthening exercises right from the start. When I started it in Aug 2015 it had just been approved for use in the states 6 months before. There was a lot of unknown then. Good luck! FF

[Moijan]

Pmol,

hair loss, nutrapenia and nausea and fatigue are common on Palbociclib.

Moijanxx

[PMOL]

Hhi girls... onc is going to try to get me on the trial of this one... any advice on how to deal with side effects? And what are those? And what does being on a trial mean??? Lots of questions (ehich I will obvs ask the onc when I see him next week but thought you could help me in the meantime xxxxx

[Carolyn52]

Great news still here ....and sorry about your little dog ..trouble is we get so attached to them ..they are like our babies .
Moijan
Yes ..I'm fine ..enjoyed some lovely Devonshire sunshine today and still pigging out on a large box of chocs that hubs bought me for Valentine's day. Yum.
Carolyn xxxx

[Moijan]

Carolyn, how are you today sunshine..l,bet youve been paddling in Devon cream puddles and skipping in and out of mcdonalds in the sunshine with a flake in each ear!

Love and hugs, Moijanxx😎😈😸😼🙆

[Moijan]

Well done Stillhere........lovely news. We probaby passed each other without realising.

hugs

Moijanxx

[Stillhere]

Hallo All, just a quick update on my trial, I had a 3 month CT scan last week, put my brave pants on today and had my results...a total of a 40% reduction on my lymph nodes since I started the PIPA trial last May!! I'm very relieved to be carrying on, it's been a difficult few weeks as my beloved little doggie has also had surgery for a mammary tumour. It's seems we'll both be marching forwards 😀 😀 xxx

[Bandit]

Hi Everyone.  I will get on board with this one.  I am only 4th cycle on a drug trial but so far so good and the drug is very tolerable.  There are 2 very similar drugs in the pipeline being launched by other big pharma and with luck this will force the price down and help the cause.  Bandit xxx

[Carolyn52]

Still here
It's people like you that are getting good results with it that need to be heard ...if only the drug firms were not so greedy with the price ..it could be available to so many more ladies that have to keep going through chemo after chemo to survive .
The Her2+ ladies have herceptin /kadcyla but for 60% ( I think ) that are her2 - ..this is another option that we would like to have ...not sure of the success rates but no treatments are 100% as everyone's cancer is unique .
Hopefully maybe nice will start listening to sucess stories and try negotiating a better price for it.

[Stillhere]

It said on the news last night that NICE has not currently approved Palbociclib because of cost 😥😥 I have emailed NICE and the website that Carolyn gave details of. Feeling angry... The statistics can get skewed because it doesn't work for every patient, but when it does work, it works well. There is so much evidence around the world already...gggggrrrrrrr!! xx

[funnyface]

I will write to them over the weekend.

[Carolyn52]

Whoops sorry ..typed it wrong

Campaigns@breastcancernow.org

Thanks still here ...every protest and success story might help for future .
Carolyn xxx

[Stillhere]

Hi Carolyn, I'm wanting to do my bit to promote Ibrance, wrote a long email but my iPad says that the address you gave isn't recognised ( it's saved, phew!) Any ideas? Hope you are well btw xx

[Carolyn52]

Hello ibrance ladies
On Facebook secondary bc page ..they are asking for ladies that are on this drug or trialling it to let them know of their experiences with it.
It's going to be assessed to see if it can be made available by nhs and so the more success stories etc will help it being released for more ladies in the future.

E mail: breastcancernow.org .
Xxx

[Carolyn52]

Bringing this up for new ladies

[MaggieMac]

Hi Bandit,

Thanks for replying -  I've contacted the moderator about getting authorised to private message.

I would like to know if the trial is still recruiting, what the eligibility criteria is, is it a randomised trial or once accepted does everyone get the drugs involved, and lastly (for now!) who my oncologist would contact if I was eligible? 

Best wishes and thank you for you guidance. XX

[Bandit]

Hi Maggie. I tried to PM you but it said you do not have messaging enabled! What would you like to know about the trial that I am on? Bandit x

[MaggieMac]

Hi Bandit,

Still waiting to be allowed to private message!

Maggie XX

[MaggieMac]

Thanks Bandit, not PM'd before so will need to work out how to do it. Also, need to have posted 5 times before I'm allowed to do so and this is my fifth! Will be in touch over the weekend.

Thanks again,

Maggie XX

[funnyface]

That's great Bandit! Love stable!!

[Bandit]

Hi MM. The trial is at Singleton Hospital in Swansea and I was referred by my Onc's in Cardiff & Newport. PM me if you want more info. Bandit x

[MaggieMac]

Hi Bandit,

Good news that you are stable.

I am also in Wales and keen to try Palbociclib - do you mind me asking where your trial is and how you accessed it?

Thank you.

MaggieMac

[Bandit]

Meant to say Palbo and Letrozole. B xx

[Bandit]

Hi FF.  On the 4th cycle of Palbo & Ibrance plus a generous helping of Denosumab.   Don't know where it comes from but handed to me on my trial in Wales.   Must say so far so very manageable.  Hair is thinning and I have had a couple of colds which is unusual for me but otherwise feel pretty well.   I had my first 3 monthly ct scan a few days ago and was told yesterday that I am stable (I must say they did not say mentally stable) and I am pleased with that.   Bandit xx

[funnyface]

My palbociclib is now coming directly from Pfizer! I never noticed this on my labels when I got it from a specialty pharmacy, but this label says Mfg : Pfizer Ireland.....now I'm really wondering why you can't get it.!!

[Bandit]

Thanks FF. Bandit xx

[funnyface]

Bandit, I forgot, there is a prescription called magic mouth wash that numbs the sores. You could also get baby teething ointment. FF

[Bandit]

Thank you. My mouth seems ok now so fingers crossed. xx

[HelenAquarius]

Hi Bandit

ive been prescribed difflam which is a green mouthwash when I have a sore mouth and also a gel thing like a teething gel. Cant remember what its called.

I hate the sore mouth thing but mine seemed to calm down after a while.

besy of luck! 

Helen xxx

[Bandit]

Gosh FF lots of colds sores and a wart sound horrid.   My mouth feels better now and I have bought some bicarbonate of soda which I thought I had seen discussed as being helpful.  These low blood counts are a bore but I am also aching all over.  Pain is really bad.  I presume it is a s/e of all the drugs pluse oestoarthritis and bone mets but haven't seen anyone else complaining of pain.  Heyho or at this time of year maybe hohoho.  Anyway hope you are feeling ok now.   Bandit xx

[funnyface]

 Bandit, I haven't had a sore mouth on chemo, but read somewhere t at pineapple was good for it. I'm not sure I agree with it, bc I know fresh pineapple can make your mouth sore if you don't get all those "eyes" out. My blood counts were down in October and in November I found a wart on my thumb and then I started breaking out in cold sores. I got a new one every day til I had six of them. I've never had a cold sore before and haven't had a wart in 40 years. I do think these viruses happened bc my immunity was down. FF

[Bandit]

Hi mouth a little sore this morning when cleaning my teeth. My blood counts were low at last test! Has anyone any recommendations re mouth sores? I expect everyone busy with Christmas things but if you have any suggestions they will be gratefully received. Hope you are all doing ok. Bandit xx

[funnyface]

Did a little info searching on ribociclib. I found an article from Nov 1 that the USA FDA is fast tracking a review on this drug. From what I read it works very much like Ibrance. It is given with letrozole. What I can't find is that if Ibrance fails you, could you give this a try. Also at first they said Ibrance was to be given with letrozole and then they gave it with other hormonal. Very curious to see if that will be the case with this. I've also wanted to know in the case of Ibrance/letrozole failing if they try Ibrance with another hormonal? I think I will have to ask my onc some if these things. I know for me when this combo fails, I woukd j u st likr to take a hormonal for 3 months, so I can get the shingles vaccination. I hope my onc will agree to my idea.FF

[Waffles]

Hi ladies,
I looked back this thread and noticed a post by Bearbob that mentioned that Palbociclib is available on Pfizer's expanded access/compassionate use for SBC if you have already had 4 treatments that have stopped working. I'm not far enough along yet but will mention this to onc for future reference.and in the meamtime will look out for the trial Bandit mentioned.
Stillhere, thanks for mentioning about Ribociclib will certainly look out for this wuth great interest.
Carolyn,
Your right, we can only hope that drugs that are similar will keep the price down and allow our NHS to buy them.
Thank again xxx

[Carolyn52]

Hopefully with competition ..the drugs might become cheaper and within the nhs budget as its just so unfair that these newer treatments are not available freely to everyone although the trials show such good results .
Carolyn xxx

[Stillhere]

Hi Waffles and anyone interested....there is a new drug LEE011 or Ribociclib made by Novartis that is allegedly very similar or identical to Palbociclib and is also undergoing trials so worth keeping a eye on. The criteria for entering the trial may be slightly different but your Onc should be aware of these trials, I think that they combine with a hormonal as well xx

[Waffles]

Hi Bandit,
I will definitely look into that. If you find out any more please let me know. I live in Scotland and we don"t really get that many trials up here compared to the big cancer hospitals down south. Hope the hospitals up here get on board with this trial. Best wishes xxx

[Bandit]

Hi Waffles.   I know that there is a big trial recruitment coming up.  Obviously what previous treatments one has had will have a bearing.   I am sure I found something on the Internet that mentioned it would not include bone mets only people - don't know why.   Talking to your Onc now to get a shot at this even if not at a hospital close by.   It is a bit of hassle getting onto a trial with lots of tests and scans (couple of months) but after that is should be a monthly visit.  Good Luck. Bandit x

[Waffles]

Hi all,
I am interested in palbociclib as a possible future treatment but have been told that as it is unlicensed this is impossible. I assume that everyone here must be getting access to the drug through a trial or by compassionate use agreed by the drug company. . Can anyone advise? xxx

[Stillhere]

That's great news, Bandit! Hopefully your bloods will stay good from now on and you can enjoy Christmas with no scan until next year! I keep telling myself it is light years away..... I'm also doing well with my guts much more settled and still hanging onto some hair and eyelashes. Take care everyone xx