63315members
333052posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets. Help

19 REPLIES 19
Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Thanks Mummybob! That’s how I understood it re Palbociclib etc., was just a bit confused when I read your earlier post. Had a similar discussion with my Onc, have been told when I need to change treatment I can go onto what you’re now taking. Kate x

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Kate

 

3 years officially but there’s a good chance I was secondary at first diagnosis.  After my initial treatment I was on Tamoxifen.  This affected my vision so after 2 years I was moved to Anastrozole which worked well on its own.  Earlier this year my cancer progressed and I got further spread to my liver so my treatment was changed.  I now have fulvestrant jabs and Abemaciclib ( this is similar to palbo but you take it everyday without a break).  I was not eligible for Palbo because I am now classed as second line treatment for secondary and NICE only approve it for first line I believe. There are 3 drugs available at my clinic that are targeted treatment.  I was also told there was a chance I could try the other one (Ribociclib?) if I couldn’t tolerate the one I’m taking. My last 2 CTs have shown that this combo has halted my cancer growth and I’m now stable.  I am on lowest dose - 50mg twice a day plus jabs every 28 days.  Hope this helps 

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Mummybob, can I ask you please, you’ve been diagnosed for 6 years, is this 6 years with metastasis, or since primary diagnosis? Just interested as you’re on Palbociclib, so thinking you’ve been diagnosed with secondaries more recently?? Thank you, Kate x

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Dot, we have a club in Sheffield where people with secondary cancer get together.  There are women in the group who have taken just Letrozole with great results.  Two of them went to NED even though they will still be classed as secondary as the drug will eventually stop working.  As others have said it’s quite recent that additional drugs have been added to the mix but Letrozole on its own can work really well.  I would be careful taking too many supplements as they can interfere with the treatment.  The additional drugs such as Palbo are targeted therapies and my understanding is that they help to prolonged the effectiveness of the hormonal drugs.  I am now on one of these drugs but on a lower dose which I now tolerate really well.  However some of these drugs especially at the higher doses can have severe side effects and for some, like your wife, are just not worth the risk.  I can understand your love and concern for your partner but don’t let the cancer take over your life. Try to enjoy the time you have to the full by doing things you enjoy.  I have had cancer for 6 years now but apart from my drugs I try to enjoy my time knowing how precious it can be. I haven’t altered my diet drastically and still enjoy the odd glass of wine etc.  I don’t take any supplements either.  Perhaps you could try and start up your own get togethers in your area with others who are secondary as I think this would really help you both.  We get sad times in our group but the support we get from each other is invaluable. You can read about our group on our Facebook page by searching ‘Cancer Treat Club’.  It will help you to see there is hope.  Take care and be kind to yourselves xx

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Thank you Paris. I have bought some but not arrived yet. I know Philomena isn't taking chemotherapy now but I want her immune system brought back to what it should be and her blood tests to show better results. If we can do that with the Life Mel Honey then it will be worth the price. I am not attending the Royal now. I had my spine biopsy there because the Orthopaedic surgeon there is the only one who can do those biopsies for the region. But it would be nice to meet up one day and have a chat. Since January when they found Philomena's spine secondaries I have often wondered why there are no groups set up around the Merseyside area for people to meet and compare notes and chat about how they feel to people who understand and maybe have a cup of tea or coffee or whatever. I think it would be good because talking to someone with the same or similar illness to you is comforting. It's hard keeping your feelings hidden for the sake of family and friends but at such a group it would be easy to let them out to someone who knows how you feel.

I will let you know how we get on at the Oncology appointment on the 11th. I have a big list of questions to ask. Stay well xx

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Dot13. Yes it was Life Mel Honey. I've not bought it yet as its a bit expensive, but plan on doing so soon. Let me know how you get on at the hospital on 11th. I'm there on 18th. Shame we didn't have the same date as we could have had a good chat about our experiences! Hope your wait isn't too long!

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Thank you Ri and Paris for your kind information. Paris, Philomena wasn't given the option of 2 weeks off instead of one but I doubt it would have helped. Palbociclib just didn't suit Phil. As her kidney's went in to failure and her heart has already been treated for mild heart failure, I think her Oncologist is afraid Phil will react further and get total organ failure. We have mixed feelings about it. In one way we know the Palbociclib was working and her cancer was responding well to the drug and we were happy about that. On the other hand we are happy she is off the drug that has ruled our life since she started on it in May and she has been in and out of hospital practically every month. Her taste is still affected too which adds to her appetite loss. We have reduced our sugar intake drastically to and we are eating organic vegetables when we can get them. We are getting a juicer to make smoothies with too. Philomena already takes Metformin as she is a type 2 diabetic. She tolerates Doxycycline too. I will ask about the Berberine too at next appointment. I have a list of items I want to ask when we go on the 11th. Philomena is taking prescription tablets for other illnesses so we will ask the pharmacist if any will react with the Turmeric and black pepper we want to start taking. The doctors don't have a clue but the pharmacist is the one to ask about drug and suppliment interactions.

Ri, ask your pharmacist about supplement interactions with the drugs you are taking. They know better than anybody.

Paris, it's on my list to ask why no other treatments when Philomena has recovered. I think it's fear of complete organ failure. We are going to go down the route of the COC in London. It's expensive but we will find the money by doing without other things. Thank you both for taking the time to write to me, you have both be very helpful. Is that "Life Mel Honey", Paris? God bless you both. Keep as well as possible. Hugs xxxxx

 

Ri
Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi,I am also on Palbociclib,denosumab and Anastrozole.

The consultant at Royal Liverpool LMC told me not to take any supplements as they would skew my blood results. Would like to take some , for help with fatigue and bone pain but am too scared.Are they safe?

I am now on cycle 19,(100mg),  3 weeks on, 2 weeks off to recover as always neutropaenic.


@paris wrote:

Hi Dot13..yes I'm on letrezole,palbo and denosumab. The palbo is causing my neuts to crash and now on 3rd cycle. I've been reduced to 100mg but still get to 2nd week and I'm wiped out and having to stay off work. Oncologist is reluctant to reduce any further yet as it's working, however I'm still very tired. The clatterbridge nurse told me to take iron supplements which I've just started. See if that helps. I try to eat more healthily and have drastically reduced my sugar intake as this is supposed to be what cancer cell feed off. I'm taking tumeric and black pepper from Holland and barratt, omega 3, vitamin b complex and going to ask oncologist about berberine and also metformin which is a drug for diabetics which studies have shown its effective alongside conventional treatments to attack the cancer. Whilst waiting for my oncologist appointment at the Royal 2 weeks ago..usually 2 to 3 hours wait as you might have experienced!, a lovely lady sat opposite me handed me a magazine called Icon, which is available in the hospital. It describes how diet etc and repurposed drugs like metformin are helping to kill the cancer cells. I'm still very sceptical but she and her husband were adamant they work. She also told me to get life mel honey...expensive but her neuts never dropped below 1.9 whilst on palbo. Hope this helps and dont give up. Tell your oncologist what you want and get an explanation of why they are not offering other treatments. I'm very impressed and very grateful for the wonderful doctors, oncologists and nurses at the Royal but its important to get answers to your worries and fears as I'm sure there is a good reason why some treatments are not offered. Everyone's cancer is different. Good luck xx


Y

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Kate, I have already signed up to receive his newsletter and I have bought the book, Oestrogen The Killer in our Midst which was available via his website. I am going to see if I can get the magazine too. We need as much information as possible. When my partner had her primary breast cancer in 2008, I stopped her drinking tap water because there is a lot of oestrogen in it because of the Pill use and HRT. The water companies can purify water but it can't remove the oestrogen so we both drink bottle water from a spring not just filtered tap water. I watch what she eats that has Soy in it and lager because oestrogen is in hops.. I am sure this book will help further. Thank you Kate for putting me on to this website and Chris Woollams. Hugs xxx

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

You’re very welcome Dot, some hospitals etc get sent Icon, others don’t. I get the impression it’s down to the hospital, not Chris Woollams...let’s say some seem to be more welcoming than others to alternative ideas! That said, you can buy Icon via the website, or you could, I bought some issues a while ago but he sends information out in his newsletters and there’s a lot of information on his website. He has written some books which are listed on the site. Hope things are settling down for you, Kate x

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Thank you, Kate. I will check that out. It's always important to be aware of new information so I will subscribe to his newsletter and see if I can get the magazine. Thank you for thinking about us and sending the information to us. Hugs xx

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Paris and Dot, you may know already but Icon magazine is published by CancerActive Chris Woollams’ charity, there’s also a website, canceractive.com . You can also sign up for his newsletters which he emails more or less monthly. Kate x

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Dot13..yes I'm on letrezole,palbo and denosumab. The palbo is causing my neuts to crash and now on 3rd cycle. I've been reduced to 100mg but still get to 2nd week and I'm wiped out and having to stay off work. Oncologist is reluctant to reduce any further yet as it's working, however I'm still very tired. The clatterbridge nurse told me to take iron supplements which I've just started. See if that helps. I try to eat more healthily and have drastically reduced my sugar intake as this is supposed to be what cancer cell feed off. I'm taking tumeric and black pepper from Holland and barratt, omega 3, vitamin b complex and going to ask oncologist about berberine and also metformin which is a drug for diabetics which studies have shown its effective alongside conventional treatments to attack the cancer. Whilst waiting for my oncologist appointment at the Royal 2 weeks ago..usually 2 to 3 hours wait as you might have experienced!, a lovely lady sat opposite me handed me a magazine called Icon, which is available in the hospital. It describes how diet etc and repurposed drugs like metformin are helping to kill the cancer cells. I'm still very sceptical but she and her husband were adamant they work. She also told me to get life mel honey...expensive but her neuts never dropped below 1.9 whilst on palbo. Hope this helps and dont give up. Tell your oncologist what you want and get an explanation of why they are not offering other treatments. I'm very impressed and very grateful for the wonderful doctors, oncologists and nurses at the Royal but its important to get answers to your worries and fears as I'm sure there is a good reason why some treatments are not offered. Everyone's cancer is different. Good luck xx

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Paris, thank you for your really kind message. I am sorry you are going through it too exactly 10 years later. It is criminal that patients were not told it can come back in the bones after 10 years. The fact that now patients are left on hormone tablets for 10 years shows I was right to ask for my partner to have more years on it rather than end it at 5 years. Like you, I am really angry at what has happened. She was supposed to have Denosumab injections but somehow that was quietly forgotten. That is another item to add to my list of questions when we see the Oncologist next month. Thank you for reminding me, Paris. It's such a stressful time and it's been very stressful for the last 10 months. It's hard to think straight. I am consumed with anger and fear and my partner is very frightened and in complete despair. Are you having Palbociclib drug as well as Letrazole and Denosumab? How are you on the Palbo? It has been a dreadful drug for my partner. It almost killed her. Are you taking any supplements like Turmeric capsules etc.? Wishing you all the best and keep as well as possible. xxx

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Dot13. I too was not told breast cancer would likely return in my bones. I had 5 years on hormone tablets and then told I was fine and no longer needed to take anything. At the time I felt very vulnerable having no further check ups, tests etc apart from routine mammograms and feel quite angry now that had I been forewarned I could have done more research into how to prevent it maybe or at least prepare myself for it returning. Nowadays hormone tablets are given for 10 years. I was diagnosed in august 2009 and it recurred exactly 10 years later. I too am being treated at the Royal in Liverpool. I have denosumab injections too. Does your partner have this too to strengthen the bones? X

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Nicky, I am so relieved to read your message. I didn't know Letrazole was used solely without any added chemotherapy drug until the last couple of years. My partner had Anastrozole for 5 years after her primary breast cancer in 2008. We were under the impression that after 10 years it wasn't likely to come back but that is so not true. When she went to Liverpool Royal for a biopsy on her spine she was told that most secondary breast cancers do return in the bone after 10 years, it's just not told to us at the time of the primary. I can understand why but it's a form of lying by omission. When she was finishing her 5 years on Anastrozole I had read about it being a good idea to leave a woman on it for 7 years not 5. I asked the Oncologist at the time could she have another 2 years on it and he said there was no evidence it would help.

We had a visit from the McMillan nurse today and I wish she knew what you have told us. We are beginning to accept the decision to leave her without more chemotherapy as being the best one for her. She has been through so much since starting it in May. So many hospital admissions and only one arm to take blood from and use for IVs. She has been very poorly several times and we were told any more chemotherapy is likely to kill her. I now believe I will have her with me for longer without the chemotherapy drugs and just taking the Letrazole. I am trying to build up her body, her mind and her hope. We have been together 33 years and I don't want to lose her. Although she is 70, she is a very young 70. Thank you Nicky for giving us our hope back. Hope is such a powerful emotion that to have it taken away leaves you adrift with no life jacket in a raging sea. We are so grateful you were kind to write to us. You have helped more than you know. Hugs xxxxx

Community Champion

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Dot13

So sorry your partner and you are going through such a tough time at the moment. You asked about Letrozole and it being good enough on its own. Well, it was only ever prescribed on its own until last year (or possibly the year before) when the newer elements were added. From my understanding the Letrozole itself is the main element of the treatment and the added ones lengthen the effectiveness of the Letrozole. I can’t remember all their names and what group of drugs they belong to, I think it’s some type of steroid hormonal but don’t quote me on that! I have had anastrozole and letrozole over the years I’ve had secondary BC, neither of which had any drugs developed along side them to increase their efficacy. So the answer is, yes, the hormonal drug will work on its own. It sounds like your partner has been through so much and that her oncologist is dropping the element of the treatment that is likely to have caused such problems but leaving her still with the element that has been in use for many years. This should hopefully give her body time to recover without the added stresses that have been put on her. I do hope she picks up soon and regains strength, after which time, and a scan, her oncologist might be able to offer some other options.

Nicky x

Member

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

Hi Annie, thank you for your welcome reply. You have offered some good advice. I asked the Oncologist if there was another drug we could try and she said no. We see her again on 11 December so I will go armed with Ribociclib and Aminociclib and Radlotherapy. Surely something else can be tried rather than cut her adrift with just Letrazole regardless of how good the drug is (talked up by Oncologist) but I am not convinced. I can't remember the dose she was on but the Oncologist didn't offer her 2 weeks on and 2 weeks off. She just said the drug is toxic to her and it had to be stopped. The Oncologist admitted the Palbociclib had done a lot of damage to her organs and hence she is a lot weaker than she was before the Palbo. She told us she wasn't prepared to give her anything else in case she died from the treatment long before she would do from the cancer. I can understand what she is saying and I have thought about that a lot even before she said it to us. Do you push for treatment that could hasten your demise long before the cancer would get you or do you take your chance just with the Letrazole and probably live longer with a better quality of life. On the Palbociclib she had no quality of life. She was always very ill and in and out of hospital. She has Lymphoedema in her left arm so there is only her right arm to take bloods from and put up IVs in. Her arm is a complete mess now from months of IVs and daily, sometimes more, blood tests. She is still very weak and emotionally fragile and I need to build her up in both body and mind. The McMillan nurse is calling tomorrow to see us.

Thank you for your kind reply, Annie, I appreciate it very much. I wish you continued good health for many years. xx

Community Champion

Re: Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets.

  • Hi Dot, my heart goes out to both of you. You don’t say what dosage your partner is on but I’m on 75 mcgms, 2 weeks on and 2 weeks off. It took a year to get the right dosage and rest periods for me. I had an occlusion in my right lung with the first dose and spent two weeks in hospital on oxygen so I know where you’re coming from. Fortunately my other organs weren’t affected. Have you asked about the newer drugs Ribociclib and Aminociclib(?) which are apparently kinder? You don’t say where you are based, but can I suggest that you look for a centre of excellence for cancer and get a second opinion, or just a second opinion in a different hospital. There are always good doctors and great doctors aren’t there? I believe that Letrozole was the go to drug for bc and there have been good success stories.  As for descending into despair I can understand that. Through my Onco I accessed help from the psychological services as my body was so exhausted I wanted to stop the meds. I also attend my local Maggies centre which has nurses and psychologists on tap as well as yoga and TaiChi tutors. I also attended sleep workshops and a meditation course. All of this helped to build up physical strength and mental resilience. Macmillan also offer help and advice and these can be accessed online initially. Massages are offered in my hospital although there is a bit of a waiting list. I’ve found them to be very relaxing and energising. I know the nurses here would be a very good source of support and information for you. I hope that you and your partner find some way forward. Wishing you all the very best.  X
Member

Palbociclib is killing my partner so it has been stopped. On Letrazole only now for spine mets. Help

My partner was diagnosed with primary breast cancer in 2008. She had the works, surgery, chemo, and rads. Then Arimadex for 5 years. In January this year she had an MRI fir acute heart failure which they sorted out but scan showed up spine mets. She was started on Letrazole and Palbociclib in May. She had 3 months of Palbo and was taken to hospital with Palbo induced pneumonia. Her Oncologist gave her 6 weeks to get strong enough to begin a reduced dose of Palbociclib. She started the reduced dose Palbo in September and October. By the end of the October 21 days she was taken to hospital again with Palbo induced Acute Kidney Injury. She was very unwell and she is still struggling with her health. She saw her Oncologist on Wednesday and she said she couldn't give her any more Palbociclib because the drug is killing her. She said it's not suitable for her and she couldn't chance giving her any more. The drug is too toxic for her. She said the Letrazole alone is a good drug in its own right so she said stick with that and they will continue to see her and give her 3 monthly scans. The trouble is my partner has decended in to total despair. She feels she will die earlier now and they have given up on her because they couldn't offer anything else to go with the Letrazole. Has anyone else been told that Palbociclib is not suitable for them because it is causing more problems than the cancer? Any good stories about how just being on Letrazole is doing a good job? My partner's spine mets are stable and her next scan is January 2020. She us aged 70 and I am 68 and she has looked after me for 30 years as I have neuro-immune disease and I am in a wheelchair. She is fretting about how I will cope without her. She is quiet, withdrawn, depressed and in total despair. She already has anti depressant tablets but hasn't started them yet. Can anyone relate to this situation. I am looking for ways to help her the best I can. Also the decision to stop the Palbo with no other chemotherapy, although I understand why and agree with, but it's hit me hard too. Thank you very much for taking the time to read my story.