Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Those who are in the 400mg club take heart. If 400 didn't work there wouldn't be the option. There is a 200mg but haven't run across anyone on it but 1000's aren't on this site. Hang tough. J
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Hi all,
Samuka, I think they start everyone on 600, but obviously this is not going to be the best dose for everyone. I have been on 400 for over 6mths, and my cancer continues to shrink. When you consider we all come in different shapes and sizes, it's not surprising we all have different responses to the drug (some people are on 200 and still get good results. Once your side FX settle down on the 400 and your WC count normalises you will feel a lot better.
Try to stick with it.. My onc has told me several women who started on the combo around the same time as me have had to drop out, and are now on chemo or similar... I would prefer to just take the pills.
Cheers'
Jackie
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Hi Girls
I only take 200 mg and have for the past 10 months. I had terrible problems with my skin. I have had great results on this combo. I was not happy when my Oncologist made me drop to 200mg . I could not have gone on with weeping skin and I feel fine on the 200mg and my skin is great.
Im just happy to be on the combo.
Wishing you all positive results with your scans hope your anxiety is at a minimum mine won't be
Lots of hugs Mandy0 -
Ladies ... I have been on 600 mg for 15 months. While I do have issues with my skin (itching, flaking), my doc has never reduced my dosage. Thinking that a change in meds is coming soon since my markers have been creeping up slowly for the last 4 or 5 months. My December scans showed a very small lesion on my adrenal gland, so this may be the culprit. Just watching until new scans, probably next month. Hoping no change is necessary, since Itching is really the only side effect I have experienced.
Wishing you all well on this nightmare journey.
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Ladies, I have to ask about markers. Those of you in the U.S. Often speak of tumour markers. When I asked if my tumour markers were being checked I was told that breast and prostrate cancer do not have markers. I'm so confused now. Can someone explain this to me in plain English
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go to blood markers on this site. They are listed
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thanks JoE,
That was helpful
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Thanks Lolis, I just thought I was missing something
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Hello all,
It's been quite the week! I got married on Tuesday! I had my appointment today and scan results say I'm stable! MO says my blood work is like a normal persons on the 400mg dose. He seemed pleased. He is looking for more improvement next time but I will take stable!
We decided to take off for a few days, not too far, but I'm in a very nice hotel in Niagara Falls, NY. Anything I have to do while here?
Happy Valentine's Day and have a great weekend all!
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Grats Sherry!
Looks like the combo is working for you so you have double cause for celebration!😁
Jackie
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Congratulations Sherry, so happy for you.
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Best news ever congrats Sherry
Mandy 👏🎈
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Congrats Sherry! All the best wishes for you!
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Hello ladies!
How is everyone doing? I really hope you all are good!
Has any one of you ever tried an alkaline diet and how it has worked for you? What do you think about it? I am asking you untill I see my doctor on 27th and ask her.
When I say diet I dont mean lose weight but as a lifestyle.
Hugs
Ida
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hi Ida,
I have changed my lifestyle significantly. I'm on organic diet with a lot of juice, vegetable, brown rice and occasional white meat. Is this alkaline diet? I believe my diet is helping me detox and deal with side effects.
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From what I have researched, cancer grows in an acidic environment. Yes, Operhouse House, you are on the right track. Also, quit sodas, and coffee. If you google alkaline foods and acidic foods you will find charts of which is which
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hi all,
How's everyone doing? I am starting my 3rd cycle next Monday. My wbc has passed but my onc said to stay on 400 mg. At least I'm still on the meds, can't complain.
Has anyone developed numb fingers and toes? I will discuss this at the next appointment.
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by the way, I read on Facebook. A lady with lung mets has been in NED after 4 rounds of this combo (400mg). So cheerful !!!
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Hi Operahouse,
The numbness could be because of letrozole. In my earlier cycles I has numbness and tingles on my hands and fingers. it comes and goes. in my case This can also be a residue effect from chemo.
I just entered my cycle 15 although I am on 600mg protocol. my scans have been stable since June last year (my first scan showed 60% reduction on the mass - a small mass). I have my next scan next week. My side effects have tempered off and now only have hot flushes and menopausal side effects so it does get better as your body adjusts to the meds.
Hugs
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Hi all,
One week into 4th cycle. Two cycles on 600mg and this is my second cycle on 400mg. I have good days and bad. My scans showed a fractured rib and I know exactly when it happened so dealing with that. Im gaining more energy- was out of the house 4 days in a row last week! I'm struggling with the February blues and some personal crap right now. I'm trying to get over the guilt of feeling like a lot of our troubles wouldn't have happened if I hadn't have gotten sick! Sigh! I have an amazing husband who lets me know I'm not in this alone so I know that this too shall pass.
Hope you are all doing well! Cheers
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Sherry, I echo your thoughts when it comes to our disease. It causes a domino effect of issues that are related to our sickness. It's like pulling a thread on an old sweater and having regrets that we plucked at it and now we try to knot the thread to save the garment. I too am a dreary weather casualty. I suffer from light deprivation so I turn on all the lights in the house and open all the curtains to let in the grey light. My husband has also been my knight even with his health issues. Today he gets to take me to purchase crutches to take weight off my femur. So much for a well-planned and deserved retirement. Hoping that your day will have islands of joy in this turbulent sea of sickness, treatment, and uncertainty. Hugs and Peace. Jo
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Lolis, thanks for sharing your experience. Hope my next scan will show some good results too.
Sherry, sorry to hear about your mess. I have a lot going on too. It's not one person's battle, everyone gets dragged in no matter they like it or not. I have been seeing a psychologist,which helps a bit.
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Hello ladies!
Jo and Sherry I couldnt agree more. And I too thank my husband for being there through thick and thin. Even tho we are really young!
I saw my doctors yesterday, my blood test was ok but I am scared of my phosphatasis alkaline, a liver value. They say dont worry till a certain number. But it keeps creeping up and I am scared.
I asked them about the alkaline diet too. They say it is not good to go completely alkaline because of compensating mechanisms in our body. Which means if we eat only alkaline food we make our body produce acid and make our liver do more acidic procceses to keep the balance. And our blood is slightly alkaline if we eat only alkaline we would make it more then it should be and it ruins a lot of processes.
By the way Operahause I have the exact same lifestyle.
I hope you all have a great weekend!
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Happy International Womens Day everyone! May you always be strong and courageous and be appreciated for everything you have done!
Lots of love for you!
I am glad I found all of you!
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hello all,
Quick question, have any of you experienced any kidney problems on this tx or with Zometa?
I don't have any symptoms of an infection, just some discomfort when I lay on my side. I hate that this disease drags us into worry with every little thing! Ugh!
Hope everyone is doing well.
Sherry
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Sherry ... I have been on this combo for 18 cycles. For the last 3 months I have not been able to get my Zometa because my kidney numbers levels are not so good. I had been getting the Zometa every month. Scans the first week in April to see if something is brewing because my tumor markers have been creeping up the last several months. What side is your pain on? i have had left side pain for 3 months or so. Onco says it may be a lymph node or radiated pain from the hip. I wonder. Last scans in December didn't show anything.
Agreed that every little pain sends your mind into another dimension. Hope you find all is well.
Kathy
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thanks for your reply Bay, pain started on left side, then no pain on left and pain on right, now I never know where it's going to show up. Only hurts when I first lay on my side then goes away. Doesn't hurt when I touch it or sitting or walking. It's just strange. Like me I guess! Lo
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my biggest concern is drinking enough water because the zometo is filtered through the kidneys. So far my pain has been nomadic while on Femara and zometo. I'm on a kisqali break. I blamed it for everything. My SE on zometo are minimal after a year but the femara still does a job on me
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I have never had any SE's from Zometa either. Never felt any different after infusions. My pain is on left side only. And I can never pinpoint any particular activity that causes it or makes it worse. I am aware of it for days, then will go a few days with no symptoms. It's crazy. I am attempting to drink more water but I find it difficult. I never feel thirsty and it's hard to get enough fluids. Ugh. Well, the best to you. Keep me posted.
Kathy
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