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Ribociclib/Kisqali with Letrozole - Any one on this combo?

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Comments

  • sherry35
    sherry35 Member Posts: 155

    Excellent news Joe! Congrats!

  • laine615
    laine615 Member Posts: 102

    Question: Have any of you experienced a headache a couple of hours after taking your Kisqali? It feels like a sinus headache. If so, what do you take for it?

    Thanks!

  • Idajakoc
    Idajakoc Member Posts: 71

    Joe I am so happy for you! It really gives me so much joy!

    Hope: I have headache problems. I try not to take stuff but my doctors suggest to take a takipirina 1000gr and it really helps. But I blame letrozol cos I experience it even when I dont take kisqali too.

    And I dont remmember who asked but I take letrozol with kisqali. And I am Albanian taking a cure in Italy.And I thinking about moving where that lady that has everything covered lives 🤣

    Hugs ladies.

  • Parisalways
    Parisalways Member Posts: 23

    Hi Hope,

    I too suffer from headaches. I take Advil cold and sinus, like you, they feel like sinus issues.

    To All You Ladies,

    I am on my 20th cycle of the Ribociclib ( full dosage of 600mg.)/letrozole combo. I have had all the side effects however my body is adjusting and the SE are dwindling. The nausea has subsided, the diarrhea has lessened, my hair is growing and my itching has completely gone. Good on all counts! My next ONC appointment is April 17th to discuss my CT scan and, of course, the bloodwork.

    Hang in there! Have a great weekend!

  • laine615
    laine615 Member Posts: 102

    Thank you, Paris. Congrats on 20 cycles at 600 mg!! I hope it works for you for another 20. I'll give the Advil a try

    Ida, I don't think we have that medication in the US.

    Thanks ladies!


  • Idajakoc
    Idajakoc Member Posts: 71

    Wow Paris you are two months ahead of me!

    Hope sorry my mistake, it is just a simple acetaminophen like ibuprophen.


  • sherry35
    sherry35 Member Posts: 155

    So GI office just called and want me to come in for biopsy results. I'm so scared that this is bad news for me. Please send up a couple prayers for me this afternoon. Thanks all

  • laine615
    laine615 Member Posts: 102

    Praying for you right now.

  • monarch777
    monarch777 Member Posts: 338

    Argh!!! Even good news gets whipped to the corner by anxiety. Separation anxiety from oncologist and kisqali. I had to call her office yesterday because my copay assistance will end this month if the pharmacy doesn't file which they won't because I'm currently not taking it. Been off 5 months. She said no evidence of active disease and I would continue on Femara alone unless otherwise needed. I'm no longer on zometo infusions because of avascular necrosis so that worries me. My hair is growing back, my only pain is from necrosis, so many good things but I have to fight dark thoughts. I see her May 15 with loads of bloodwork. I hate living in increments so I guess I'll try that road trip my husband wants to take. Sorry for rant when so many are on the front end of they're battle

  • sherry35
    sherry35 Member Posts: 155

    So it is bad news. My GI said biopsies showed evidence of my breast cancer in my stomach. f@$k!!!

    I am devastated. I seem to win all the cancer lotteries as this is apparently rare. Do any of you know anyone dealing with this or can you steer me in a direction here?

    I see my MO next Thursday, my guess is we will probably be switching to full on chemo but I don't know.

    I hate every minute of this effing disease

  • baywitch
    baywitch Member Posts: 63

    So ... after 18 cycles, looks like the end of Kisqali/Femera for me. Scans 4 months ago showed a new tumor (very small) on my adrenal gland. Current scans showed bones stable but a small increase in adrenal tumor. Markers have been climbing steadily for the last several months. Looks like Afinitor/Aromasin combo starting next week. Anyone had any experience with this one? While I had some issues with Kisqali, it was relatively easy for me, so I am dreading the change. Better the devil you know ... Looks like a whole new set of SE's possible. Ugh.

    Hope you are all doing well.

  • kanga_roo
    kanga_roo Member Posts: 303

    Baywatch, sorry to hear about your tumor, but glad there are other treatments to fall back on. I wonder if you can go back to Kisqali later on. I know we all live from scan to scan, and sooner or later have to move on to the next treatment. Even when we are NED, we still wait for those scan results, so we all feel the anxiety, and wait for good or bad news from each other.

    Please keep us updated on your progress, it is so important for us who have a common bond because of our cancer treatment.

  • Idajakoc
    Idajakoc Member Posts: 71

    Baywatch I feel sorry for the results! Please look at this possitively: there are other ways of treatments!

    Please keep us updated!

    Lots of hugs!

    Ida

  • Lolis
    Lolis Member Posts: 294

    Sherry, really sorry about your progression!! Any more need from the MO?

    Baywitch sorry for your progression as well. I know some ladies on the liver threat jave experience with AA and the may be a thread on the combo.

    hugs and keep us posted

  • sherry35
    sherry35 Member Posts: 155

    Hello all,

    So my onc, although surprised, feels that my stomach mets have most likely been there all along as I have been symptomatic for months- gastro issues were my very first symptom and never resolved. We do not feel that this is progression. I will stay on the same tx plan. New scans will be done at the end of May, this will be after my sixth cycle is completed. I feel confident in this plan.

    I hope you all have a wonderful Easter weekend filled with love and joy!

    Sherry

    P.S. When does the hair stop falling out?!?!?

  • vazmutena
    vazmutena Member Posts: 17

    Hi ladies! I am so happy to see so many known faces here – Joe7777, Kangaroo, Lolis, Ida, Parisalways…

    I am on Femara+Ribo from 07/2017. Liver mets. They started to shrink after 3 months treatment and after another 3 months they shrinked to half of the initial size. Then they stopped shrinking. Now my mets are here, in my liver, but no dynamics.

    So I am still here : ) I am working a lot, travelling, taking care of my children.

    Laframa, I am really like a guinea pig because we do not have still this drug in Bulgaria. So I am in a clinical study. But I do not agree that ribociclib has less studies than palbociclib! I am even sure that Ribo does not lead to so dramatic neutrophils reduction versus palbo. So do not worry! Ribo is perfect!!! I am sure it is YOUR drug!

    Leidy, I am taking my ribo in the evening and Femara in the morning. First I took the ribo together with Femara in the morning. But I had terrible palipitations (heart beats) sometimes (especially because of one of my colleagues) – so I started to take it in the evening. I am making MRI each 3 months (because of the study) and everything is OK. I consulted with my oncologist too. No problem to take it before bed. The only reason to be stated in the Patient leaflet" in the morning" is that the clinical studies are performed with morning administration : )

    Not to touch the tablets : ) My tablets are in a plastic bottle. I TOCUH them very often. One bottle has 75 tablets and I use 63 tablets per 3 weeks. So 12 tabl are left. As I should return all non-used tablets to the investigator of the study, I put all the tablets of 3 plastic bottles on the table, mix them up and start to count them and to put 12 non-used tablets in each bottle : ) But please ask your doctors WHY we should not touch them…Now I am afraid that I touched them. What about if they are toxic (: ))) I like when somebody tells me that sth is TOXIC – after all my chemos and all the crap…)

    After terrible hair loss, + 6 kilos, mild skin rash and palpitations, now the problem with the joints is getting worse. I have joint pain for more than 6 months. But recently it is constant, especially in my feet, thumbs and coxae…And in the knees too. What about the "old" guys here? DO you have it?

    For all the new-comers – hope this is YOUR drug! My advice: make sport! I started ribo in July 2017 and I started to feel fatigue, dizziness, somnolence, lack of energy…all of this crap. But by chance I started to go to Zumba 3 months later. So everything changed : ) Find your sport and go to it. Yoga, pilates, dancing, Zumba, running, swimming…Go out and make sport : )

    Hjertemor, dear – the fatigues is only in your head! Do not think about it! Go out and walk, run, bike : ) You have so wonderful parks in Copenhagen ( my sister's family is living there). Anyway, it is OK if you stopped working and you feel OK. And what is RF? And yes, you have the best world's social policy…but I do not wish it to anybody, you know : ) Unfortunately in Bulgaria it is just the opposite.

    Hope1018, Kisquali is registered all over the European Union via the so called "centralized procedure" – so it has a valid Marketing Autorization in all the 29 EU countries. The problem is that it is not sold in all countries. For example it is not available in Bulgaria. And if d=some day it is reimbursed and available, unfortunately the access to this treatment will extremely difficult – we ware the poorest country in the EU so the Ministry of Health is doing its best not to reimburse expensive medicine and to delay their market access : )

    Jpe7777 – so it IS possible to stop Kisqali if you are OK? Really?!? When I entered the study I asked my oncologist how long I should take it and she answered me – it is a chronic treatment. You should take it as long as you live. And now you are whout it? Bravo! I may imagine how do you feel, dear! I can imagine your fear. Nevertheless I think that our bodies have right to have a little rest. And if Femara is OK up to now, do not worry. It is better for you! And you are giving me hope that if the study is over and we do not have Kisqali in Bulgaria, the Femara will keep me over the line : )

    Baywatch and Shery…I am so sorry for your progression, girls. Sherry maybe Kisqali is just not your drug. You should calm down and try to make your way and your drug. I will pray for you dear. Baywatch – 18 cycles and then adrenal tumor…I really hope the tumor progression is too small and it will increase veeery slow. I hope the new combination will be your drug, dear…

    Love you!

  • Lolis
    Lolis Member Posts: 294

    Vazmutena, good to hear from you and glad you are well!!!!

    Sherry, hopefully it is not progression!!! I would ask for a second opinion of there was no indication of this mets on your previous scans.

    Re not touching I was told the same thing and asked to wash my hands if touched the pills. if May have to do with the coating that may not be the same as other pills since still a study med.

    happy Easter everyone!!!

    hugs

  • Idajakoc
    Idajakoc Member Posts: 71

    Hey Vazmutena great to hear from you! By the way I was told the same when I asked my docotr about how long this medication has to go on. But I figured because of my age.

    Sherry I really hope it is not a progression and I would have to agree with Lola on that second opinion!

    Happy easter everyone!

    Hugs


  • sherry35
    sherry35 Member Posts: 155

    I hope everyone is quiet because things are good right now.

    I'm in my sixth cycle and will ask again, when does the hair stop falling out? It's a good thing I had very thick hair to begin with because I'm shedding like crazy and have been since the first cycle.

    It's nice that the weather is finally turning- feels like spring is here!

    Sherry

  • kanga_roo
    kanga_roo Member Posts: 303

    Hi Sherry,

    I’m like you, had quite thick hair to begin with. I think hair loss is one of the femara side FX because it reduces our hormones. I’m on my 15th cycle, and my hair is still dropping out, but still growing too. It has thinned, but I haven’t got any bald patches. I think it is more fragile to hair straightening etc too. My eyebrows and lashes are OK. If it continues and gets really thin, I think I will buy a wig, but it still looks OK.

    Jackie

  • sherry35
    sherry35 Member Posts: 155

    Thanks Jackie! I hope I get to 15 cycles! That's awesome! I was on femara for 6 years previously and never lost any hair then so for me I'm sure it's the Kisqali. I don't have any bald spots either but my hair is everywhere! I'm thinking of maybe doing something funky with it colour wise since it's falling out anyway! It doesn't bother me, was just curious if it ever stopped

  • monarch777
    monarch777 Member Posts: 338

    My hair came out constantly on kisqali. It also became very fine. It continued to grow slowly but when I ran my fingers through it I would have a disturbing amount between my fingers. I've been off kisqali since November and that has stopped but Femara slows growth but new grow has picked up.

  • Idajakoc
    Idajakoc Member Posts: 71

    Hello everyone!

    Just a good news I wanted to share with you all!

    Today I did my sixth TAC and everything seems stable with the breast mass and the one in femur is completely gone now. I will be going on with the 19th cycle.

    Sherry I have gone from long hair to a bob cut and something pixie cut and the last one has helped a lot. I have always had thin hair but my hair now feels better!

    Hugs

    Ida


  • kanga_roo
    kanga_roo Member Posts: 303

    Ida, I am thrilled you are doing so well! Hope everyone else is doing well too!

    Jackie

  • sherry35
    sherry35 Member Posts: 155

    Ida, that is great news! I hope I can get 19 cycles! Congrats

    Sherry

  • Cranky_Koala
    Cranky_Koala Member Posts: 5

    Hi to all

    I have been following this forum for a little while as the most helpful place to understand the kisqali/ letrozole combo - I live in Melbourne Australia and have benefited from the Australian government placing Kisqali on the PBS only three weeks before my stage 4 diagnosis. So I thought it was time to say hello. Ok I am up to cycle 9 of this combo - 600mg until cycle 7 when my wbc went down - so I am now on 400 mg and Bi monthly denosumab. Following on from the hair thinning discussion - yes progressive hair thinning - sigh - but after cycle 7 - I preatty much have got my mojo back - on my scans after 5 months - all my various tumours including the chunky 3.5 liver tumour have shrunk by half - yah and tumour markers have continued to drop :). I am hoping to stay on this combo for as long as possible - my oncologist has patients on plus 30 cycles - let hope that works for us all. Thank you for your commentary - it has been very informative.

    Best wishes to all

    cheers

    Ali

  • kanga_roo
    kanga_roo Member Posts: 303

    Hi Ali, and welcome to our forum, nice to meet another Aussie! I’m similar to you in so far as I’m on 400 mg and doing well atm. 30 cycles is impressive, gives us all something to aim for!

    JoE, I forgot to ask, but will you be going back on the Kisqali if there is any progression in the future? Sounds like you are doing well without it atm

    Jackie

  • sherry35
    sherry35 Member Posts: 155

    Welcome Ali. Sorry you had to join us, but glad you found us! It's good to hear about 30 cycles! I'm currently on 400mg as well- in my 6th cycle currently.

    Thanks to everyone for the comments about hair. I think something funky is in order for mine.

    Cheers,

    Sherry

  • Dragonfly46
    Dragonfly46 Member Posts: 13

    I started on Kisqali and Anastrozole in January so I am have now finished my third cycle.

    I have breast cancer in the fold under my breast which has gone into the skin. It is at the moment inoperable because I would need skin grafts etc. Eventually I am due to have a mastectomy as they have also found another small tumour in the breast. The Kisqali will hopefully shrink it so it is more operable.

    I had lots of hiccups with Kisqali as it slowed my heart rate down so I had to keep stopping it. I am now on 400mg and hopefully all is fine.

    I am so pleased I found this forum as there are very few people who have experience of this drug and how effective it is.

  • kanga_roo
    kanga_roo Member Posts: 303

    Hi Dragonfly,

    I really hope the combo works for you. I had quite dramatic results over the first 6 months with over 50% shrinkage, but like everyone here, we live from scan to scan, hoping things are stable. There is several of us on the 400mg because we had side FX, but the lower dose seems to work just as well.

    It would be good if you filled in your profile so we can get to know you a bit better, the type of cancer etc. I am always amazed at what a diverse group we are. If you have a question there is usually someone who can answer it or point you in the right direction.

    Jackie

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