Breast Cancer Now Forum

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 ... View more

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 ... View more

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 ... View more

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

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

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 ... View more

Thank you, Kate, that's good to know. 🤗 xx ... View more

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 ... View more

Hi Kate, I heard that the new drugs were not as severe as palbociclib because they are improving the drugs all the time. They will have side effects but I heard they have been improved since the Palbociclib. I will ask about them at the next Oncology visit. I will let you know what our Oncologist says when I mention the COC. The drugs they use are not chemotherapy drugs. Two of the drugs Philomena has had or still has and we would like to know about the other two. We will research very carefully before agreeing to anything. It maybe that she is not suitable for treatment from the COC because she has other illnesses that she takes meds for and this might make her unsuitable for treatment at COC. We will have to see. I am only just beginning to research everything. I will let you know on this thread. Our appointment is 11th December. Thank you, Kate xxx ... View more