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Palbociclib is making my partner very ill. It's now stopped. On Letrazole only for spine mets. Help

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Member

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

Thank you raraJ75. Good luck with your big talk. Personally I think the Oncologists should start women on the smallest dose of Palbociclib and work up as it's tolerated. Once someone has reacted severely to the top dose then they are never going to tolerate lower doses. Maybe mention starting it on a low dose first. 

Thank you for your good wishes, it's very kind of you. I hope you will be fine on Palbo but do mention starting on a low dose and working up. Let me know how you get on. Big hugs back xxxx

Member

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

Hi annieJ, thank you for writing about your experience on Palbo. My partner's Oncologist didn't suggest trying 75 mcg Palbo, nor 2 weeks on and 2 off. I would have liked weekly blood tests to nip any trouble in the bud but they don't seem to do it at our hospital. Thanks to you ladies on this thread I have a lot of things I want to discuss with her Oncologist next month. We are quite happy to carry on with just Letrazole and Denusomab but if the cancer shows signs of growing then we will insist on some other regime to make it stable again. I am hoping the Oncologist will have other treatments to fall back on when the Letrazole fails. I will also insist she has weekly blood tests too. My partner has a scan due near the end of this month so we will know more then. My partner is 70 and she takes our dog out walking for a good while but more energetic exercise she can't do due to having heart failure which is stable at the moment.

whenever her temperature went over 37.5 she had to go to A&E and show her Oncology  card and they took her to the cancer ward and she was treated well. With the AKI she also had a severe kidney infection and was on an antibiotic IV drip for several days. I think her Oncologist is afraid to put her back on the Palbo or anything like it because she was so poorly. Even after she was discharged she was still very ill and it has taken months for her to come back from it. I am very grateful to you for telling me things I can go to the Oncologist armed with. I wish you continued good health and I am pleased that you managed to get along with Palbo in the end. Best wishes to you and hugs xxxxx

Member

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

Thank you, Mummybob, for telling me this very positive news. The more I am reading what you ladies say, the more we have hope and reassurance. It means a lot to us both to read uplifting stories about women on Letrazole and Denusomab only doing so well for so long. We have great hope that we didn't have before. Thank you so much. xxx

Community Champion

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

I’m one of the women who struggled to tolerate Palbo 125mcgms, 2 weeks on and one week off. I’m glad to report that after monthly hospital admissions in the early stages, including an initial 2 week stay when one lung was occluded and I needed oxygen , I am now living very happily with this drug. My oncologist kept a very close eye on things, and I did have weekly blood tests to determine at what stage my neuts crashed. I’m chugging along happily on a 75 mcgm. dose, 2 weeks on and two weeks off now. My lung mets are stable and have been for two years. The temp thing is a good guideline, but I know when mines up and I’m now relaxed enough to take it when I feel unwell. I nipped into my cancer ward for a quick penicillin infusion on Sunday as temp was 38.9 when I woke. I’m lucky to be 15 minutes away as I think A&E is the last place you want to be. As my nurse said on Sunday ‘ they’re full of sick people!’ 🤣 I do keep my hospital overnight bag at the ready but after two years the panic is no longer there. My Onco has assured me that he has loads of stuff in his bag, if and when, this combo stops working. He does ascribe my progress to me taking up physical activity, and quite a lot of it. 😇 At 73, and overweight it was quite a challenge, but I miss my aqua classes and my TaiChi and gold Zumba if I can’t make it. Funnily , my aches and pains have also lessened! 🤞I was very frustrated at first with all the hospital visits and admissions, but it’s a means to an end. I hope things become calmer and more reasonable for you both, and 2020 brings you some peace and joy. Best wishes. 

Member

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

The ladies I am talking about are only in Letrozole and Denosumab and have been for a few years without any progression.  At the time they started treatment Palbo was not available.  They cannot be prescribed it now as they do not qualify under NICE.  When their cancer progresses they will be second line treatment and may then be offered one if the other 2 CDK drugs along with a different hormone treatment or it could be chemo pills.  There are so many different treatments now.  The main thing is that they gave done very well without the Palbo for a good while. 

Member

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

Thank you, Grumpy, I will look for it and download it. I am grateful for you telling me. Hugs xx

Member

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

Hi Nicky, thank you for your very kind reply to my outreach for help. I am finding there are women on Letrazole and Denusomab only and are alive and well years later, just like you. We are reassured by reading positive stories from women like yourself and others. I have found a wealth of information on this forum alone. We expect the Letrazole to stop working eventually but, like you, another anti-oestrogen will be offered and along with the Denusomab my partner will, we hope with all our hearts, get as many years as you and more if possible.

I wonder why a drug designed to strengthen your bones can cause fractures after some years of use. I will have to ask the Oncologist that question when we go to see her next month. Thank you for all your help and advice, Nicky. We both appreciate it a lot. Keep well and keep positive. Hugs to you xx

Member

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

That sounds like a nightmare!  No wonder you are both so wary now. I think after all what you and see have been through I would be nervous taking an aspirin!

 

That is really interesting about the palbo.  I am having the big talk in a couple of weeks so no doubt they will go through all of that. 

Hopefully things will start to settle down a bit for you both now.  Big hugs 


Member

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

Hi raraJ75, yes is a CDK inhibitor but it is as close the chemotherapy as you can get. I got this from one of the Macmillan sites "Palbociclib is used to treat a certain type of breast cancer. It is a chemotherapy drug that works by slowing or stopping the growth of cancer cells."

The damage it does to the body is the same as chemotherapy and the Oncologist we see calls it chemotherapy. It does attack the good cells as well as the cancer cells and you have to take your temperature every morning and if it is over 37.5c you have to go to A&E to have your bloods checked. During the time my partner was taking it we were never out of A&E and she was admitted several times. My partner coped with the IV chemotherapy 10 years ago when Taxotere wiped her out and she had neutropenic Sepsis twice and was admitted for treatment but Palbociclib her body couldn't handle. I know the way my partner reacted to Palbociclib was extreme and she is probably that one in 1000 who can't tolerate it. I understand most people can cope with it well. My reason for asking about it on the forum was to find someone else who was unable to cope with it too. We both feel better that several very kind ladies, like you, have come forward to say they are doing well on just Letrazole and Denusomab injections. When I put up my first post I was frantic with worry because my partner was in hospital very ill with AKI (Acute Kidney Injury) caused by the Palbociclib. That's why her Oncologist will not put her on any other 'ciclib drug. The one you will be going on will be better than the Palbociclib because they say there are less side effects to them. But my partner can't even have those such was her life threatened severely on the Palbociclib. Her Oncologist said sometimes some people just cannot tolerate a drug whilst other cope perfectly well. My partner had the first 3 cycles and went down with pneumonia and was admitted. Her Oncologist gave her 8 weeks off the drug before beginning a reduced dose. It was a few days before the end of the second cycle of the reduced dose that she had to be admitted with AKI. I am sure everyone else starting Palbociclib will be fine. It just happens my partner cannot tolerate it. It's not the fault of the drug. Let me know how you get on with the drug they give you at the end of the month. Thank you for your reply and your sound advice. Hugs to you xx

Member

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

Dot

 

Macmillan do a good information sheet an denosumab - i'm sure you could download it.

 

grumpy

Community Champion

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

Hi Dot13

I have only just seen your original post from last Friday asking questions about denosumab and letrozole.

I have been on denosumab for about 7 years now, having previously been on both Iv and tablet forms of bisphosphonates (at different times I might add! and before denosumab was licensed).  During thiose 7 years I have also been on Letrozole, on it's own with no additional medications as the 'ib' group of drugs were also not licensed then.  I had no problems with either drug and continue on denosumab now even though I'm on a different treatment to Letrozole.  It is by far the easiest bone strengthening treatment I have had and also the one that I have found has the least side effects.  There is a risk, as with all bone strengthening drugs, of ONJ but for me the positive benefits to my bones outweighs these risks.  As Helen has already said I have also had it at differing intervals, starting at 4 weekly (as is the usual prescribed dose) but going to 6 weekly or even 12 weekly to fit in with the other treatment cycles I have been on.

I do have a friend who has experienced hairline fractures which have since been put down to being on bone strengtheners but she has been on them for about 20 years since she was first diagnosed with bone mets.  During that time the IV bisphosphonates probably caused a lot of the underlying problems that are now showing up, according to her research and the consultant she has seen for the bone fractures.

Good luck to your wife with her treatment and I hope she doesnt experience any major issues. As with all first doses of bone strengtheners there does seem to be a flu-like feeling which doesnt happen on subsequent doses.

Nicky x

 

Member

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

As I mentioned earlier I am due to start a drug similar to the palbo at the end of the month. However my oncologist did hold the view that the letrozole would do for now and said he had patients who had been on it for years even with lung mets.  Don’t forget it’s all there was until the CDK inhibitors came about a few years ago. 

 

I am interested in your partner’s doc comments re the Palbo and chemo generally.  As a previous poster said the palbo isn’t a chemo drug as such.  I believe it’s classed as a targeted drug - at least that’s what my onc has said as he has said that he wants to delay full on chemo as long as possible.  Is the onc ruling out any other drug that isn’t an hormonal treatment? 

Member

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

Hello mummybob, your very kind reply to my post is extra reassuring. The ladies you know who are on Letrazole and Denusomab and who are doing well, is any of them just on the Letrazole without Palbociclib? I would feel a lot better if someone is just on the Letrazole and Denusomab and is doing well. I know one person who has replied to me is on the same treatment as my partner and doing really well but most people tolerate Palbociclib. Her Oncologist has told her the other chemotherapy options all have the same side effects and she is not prepared to risk my partners life by giving them to her. She did say if a trial comes up then she will put her on it. However we remain very hopeful that the Letrazole and Denusomab will do the trick and stop the bone mets from getting any bigger. After all the wonderful replies I have had today we both feel a lot better. Thank you very much, mummybob, and hugs to you. xxx

Member

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

Thank you, Pawsome, for your very reassuring reply to my post. I am very fortunate that so many ladies have responded positively to my post. We feel a lot better today and a lot more positive that the Denusomab will be fine. We haven't found anyone who is like my partner and can't tolerate Palbociclib. I guess her not tolerating the one thing we had pinned all our hopes on has caused us to view all drugs with a jaundiced eye. The Denusomab is a different drug and we feel more positive about her having it. Thank you very much, best wishes & hugs to you xxx

Member

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

Hi Ri, thank you for your kind reply. You are a big help to us both. You replied to my original post and to this one. Thank you for your reassurance. My partner doesn't have any pain as such, thankfully, she just gets a bit of an ache in her right side but it will go away again. Co-codamol helps but it goes away on its own too. I guess the Denusomab is to stop any further deterioration of her vertebrae and make it stronger. The fact that there is other drugs for a similar effect is good news because if the injections are a problem then there are other drugs to try. There are other chemotherapy drugs coming out all the time and I asked about the Ribociclib and other ciclib drug but her Oncologist has said no because they have similar side effects as the Palbociclib so she will still be affected by them. Thank you, Ri, for your very kind help. I appreciate it. Hugs to you xxx

Member

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

Thank you, Grumpy, for your kind reply and for your welcome reassurance. I am glad your bones are improving and I wish you continued remission for many years to come. I am very fortunate that several good people have replied to my post saying similar to you and it us helping us both tremendously. You are right about this site and forum. I don't know where we would be without it and all the wonderful people answering my queries and worries. Thank you very much, Grumpy. Hugs to you xxx

Member

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

Hello Helen, thank you for your kind reply to my post. Your story has helped a lot in allaying our fears. Along with you, other people have said similar things about Denusomab. I think what has made us so anxious is the terrible reactions she had to the Palbociclib. Last year was an awful year for us both. I nearly lost her because of her reaction to the Palbociclib so we are on edge whenever a new drug is mentioned and the last thing we want is for her to get ONJ!  The fact that you are 7 years on from your secondary bone met diagnosis is also a big reassurance. I know everyone is different but we tend to cling to the positive stories. It's wonderful that you are doing so well and we wish you continued remission for many years to come. Thank you for your kind help, Helen, Hugs xxxx

Member

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

I know lots of women from support groups that have this drug without any problem and along with Letrozole some of them are now NED but will remain classed as secondary.  I think it definitely does more good than harm and the blood tests will monitor any problems.  The Palbo is not chemo it is a CDK inhibitor so your wife should still have chemo options further down the line should she need them.  Try to relax and take things as they come.  I know it’s difficult but stress will make you both feel ill.  Take care xx

Member

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

Hi. I have Denosumab every 4 weeks too (along with Palbociclib and hormone treatment). It’s a simple injection in the arm. I felt a bit fluey for a couple of days after the first two but after that it’s fine - no side effects at all. In fact like Ri has said it has been a really effective pain killer for me so a big positive in making me feel better again. I know quite a few ladies on it and they’re doing fine. It’s quick and easy and you soon forget that you’ve had the injection. X

Ri
Member

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

Hi,I have the dunosumab injection every 5 weeks at the same time as I get my next lot of Palbociclib. I have no noticeable side effects and I think it helps with the pain. I have it into my stomach, stings a bit but not too bad if you warm it up in your hands first.

If you can’t tolerate it you can always stop.It’s worth a try. xx

Member

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

It's important to realise that denosumab and palbociclib are completely different categories of drug, so intolerance of one doesn't imply intolerance of the other. This website has good info on all drugs in the publications section, and it may set your mind at rest a bit. 

When someone is taking denosumab, it's usually a monthly jab in the arm, and monitoring with monthly blood tests. Your clinic will give you lots of info about the regime and phone numbers to report any problems.

I have done 10 cycles and haven't had any problems so far. My last scan showed that the bones are in fact improving and strengthening which is great.

grumpy

Member

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

Hi Dot13

Sorry to hear about your partner's diagnosis. I wanted to give you some reassurance about Denosumab. Whilst not everyone gets on with it, I have been having it without any problems since diagnosed 7 years ago with bone mets. It was licensed in Oct 2012 as an alternative to zometa which a friend of mine has instead (she has a needle phobia so won't take Denosumab). I was my onc's first patient to take Denosumab and over the years I have had it adminstered 3, 4, 6, 8, 9, 12 weekly depending on my other treatments. Touch wood I haven't had any noticeable side effects in all that time. You do have to be careful with dental treatment though.

I really hope your partner can tolerate it, all the very best to you both.

Helen x 

 

Member

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

Hello raraJ75, thank you very much for responding to my messages. As you haven't yet commenced Ribociclib then right now you are like my partner, just on Letrazole and Denusomab and you are best placed to know all about the Denusomab without any chemotherapy drug to cloud your judgement of side effects. Yes, you are right, it is frightening the side effects of these drugs but they are life savers or at least give more years of life than if not on the drugs. We are very upset my partner's body cannot tolerate Palbociclib but her Oncologist said some patients can't tolerate it and have to rely on Letrazole only. In the case of bone mets Denusomab is given too. We are hoping she will tolerate this drug. Thank you for reply to my question about Denusomab. We feel more hopeful because of what you say. Hugs xx

Member

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

Hello Ri, thank you for your kind reply. How often do you have the Denusomab and do you have any side effects from it? As my partner can't tolerate Palbociclib we are worried her body might not cope with the Denusomab too. We are very upset that she couldn't tolerate the Palbociclib as, like you, we felt she was getting the best treatment there is available at this time, so we hope she won't have a bad reaction to Denusomab too. We are very grateful to everyone who sends us a message and tells their story. It all helps us to make the best decisions we can. Hugs xx

Member

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

I am on letrozole and just started denusomab.  Will start Ribociclib (similar time palbo) at the end of the month.

 

I have been fine on the letrozole and so far ok on the denusomab but it is early days yet. I think the possible side effects of all the drugs we are offered are terrifying - all the more so after what your partner experienced. However most people I have read about seem to be ok on the denusomab so it may be worth giving it a go with close monitoring? 

Ri
Member

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

Hi,l have been on anastrozole,palbociclib and dunosumab injections for 20 cycles now.

I feel ok most of the time except for when my white blood cells drop ,usually about day 10 of the palbociclib.I then feel a bit yucky for a week or so and then start to pick up again.

I found that when I missed my dunosumab injection,( calcium levels too low) for 2 months my bone pain in hip increased and then improved after the injection.

I am 3 weeks on Palbociclib and 2 weeks off as I didn’t recover enough after only 1week off.

I have side effects but can cope,fatigue being the worst.

I’m grateful to be getting the best treatments I can.  Good luck.

Member

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

Hello Grumpy, thank you for telling me your experience. I am very grateful. My partner is coping well with Letrazole but Palbociclib was devastating for her. She had 5 doses and was in hospital twice, once with pneumonia and the last time with Acute Kidney Injury caused by the Palbociclib. So Oncologist stopped it as she could not risk my partners life again. 

Our main concern now is will the Denusomab cause any serious problems too. I am looking for someone who is just taking Letrazole and is on Denusomab as well. I would love to hear about your experience on Denusomab please. Thank you so much. xx

Member

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

So sorry to hear your partner is in a pickle - it will be hard work for both of you.

I've been on letrozole, palbociclib and denosumab for 9 months now for spine mets - and the lesions are shrinking dramatically, a couple have disappeared.

I don't know about denosumab causing cancer elsewhere, it can affect teeth and jaw so good dental hygiene is crucial. It's effect on bones is due to calcium metabolism in the body, too much calcium in the blood is not good, so I have monthly blood tests to check calcium levels, and so far everything if fine.

I take calcium and vit D supplement daily from B###s (because i can't tolerate Adcal), and I take magnesium supplement as well. I feel OK, apart from the fatigue which is related to palbociclib, and I do have a bit of joint pain but a new mattress and gentle exercise keep it under control. I believe the pain is due to letrozole since I suffered with it during primary DX 10 years ago.

Hope this helps

grumpy

 

Member

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

Hello Ladies, I promised an update on my partner as she couldn't tolerate Palbociclib. Her Oncologist took her off it for good and any other chemotherapy drug for the foreseeable future. She said she wasn't prepared to take a chance with her life by trying other chemotherapy drugs. She did say if a trial comes up then she would put her in for it.  The Oncologist told us that Letrazole was a good drug in its own right and to stay on that and see what the scans say later this month.

Since stopping the Palbociclib my partner has become stronger in herself, her memory is a lot better but not fully back to normal, she is almost back to her usual self but her appetite is still affected somewhat, that is why we are so worried about the next step from the Oncologist. She has put my partner on Denusomab and she has her assessment for it on Monday with a view to having the first injection on Wednesday. I have to say we are both terribly worried about this drug too. I have looked up the side effects and it can cause cancer elsewhere in the body and cause pain in joints and bone as well as necrosis of the jaw, plus femoral fractures. I can't understand why a drug to protect bones can cause so much damage to them. 

Is there anyone on Denusomab injections now and how do you feel on it? What about declining Denusomab and taking Calcium tablets and high Vit C instead? Has anyone taken a different pathway? What is the general consensus regarding Denusomab amongst you all here on the forum? Thank you all very much for your help and support. This forum is a lifeline to us. Hugs to everyone. xx

Community Champion

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

Once the cancer mutates and finds a way around the Letrozole I have been told that I will be put on another oestrogen blocker. What that is remains to be seen. Letrozole normally works really well for about two years before this happens, and the Palbociclib can extend this to five or more, I’ve been told. Please be careful with supplements and do check with the Onco . In the meantime it sounds as though your partner is on the up, so have a good Christmas , you both deserve it. X

Member

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

Thank you Mummybob, this is just what we need to hear. We already feel much more relaxed after reading your message. It's very frightening when you are told you can't have anymore chemotherapy because your body won't take it. It leaves you adrift with no hope. You and a couple of other wonderful people have shown us it's not the end of the world. Thank you once again Mummybob. Christmas will be enjoyed this year. We will rest and have fun and enjoy some nice food and awful telly, lol. 😀. There is only three of us, me, my partner and our little dog, Rosie. I wish you many more years of health. Keep well. xx

Member

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

There are still many treatments available after Letrozole.  The fulvastrant injections that I am now having are often given after Letrozole stops working and can also be very effective on their own.  Try to relax and enjoy this time with just the Letrozole.  It’s an excellent drug to hold back progression.  Like anything it has side effects but they are often manageable.  You can live many years with bone mets and I know many who have.  Rest and fun are the best tonic xx

Member

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

Hello mummybob, thank you for telling me about success stories regarding Letrazole only treatment. It's wonderful to read what you have written to me. It gives us both great heart and hope for the immediate future. We were worried that the cancer would spread just on the Letrazole. My partner has it in her spine only at the moment and we want to keep it there for as long as possible. Since I posted my first message, my partner has picked up in health and is almost back to her pre-Palbo self. The drug wrecked her memory too but that is getting better slowly. She still has issues with it but not half as bad as she was. She has more colour in her face and her energy levels are coming back. We both rest a lot and sleep for a few hours in the afternoon and we look forward to that down time each day and we miss it terribly if we can't do it for some reason. 

I have researched until my fingers were numb from using my iPad constantly and I feel we are both in a better place than we were. The thanks for that has to go to this wonderful community of dear supporters, who are fighting their own battles with secondary cancer, and the Breast Cancer Now website for providing this very valuable forum. Thanks to all of you for your help, advice and moral support. We couldn't have done it without your help.

 

One last question. I understand from what you say that the Letrazole will stop working eventually. Can I ask if anyone knows, will they put my partner on another anti-oestrogen tablet? Thank you to everyone. Hugs to you all. xxx

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

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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