Ibrance (Palbociclib)
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Nurse messaged back. Not worried about 700. To continue Ibrance and recheck lab in 2 weeks. Worried.
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Candy,
Interesting article. And wow about your numbers....
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Hi all: Just had my lab done before MO appt and treatment today. My CA 15-3 was up to 49! Thats the first time its been out of "normal" range since I was first diagnosed MBC in Jan. 2017. I'm so worried about it now. She said to just wait and see how it works switching from Letrozole to Faslodex with the Ibrance. I'm going on the monthly doses with it now. Anybody else have any experience with how long before you see some benefits? I started it June 24.I'm already wondering what she'll put me on next, I've been on Ibrance 3 1/2 years. What usually follows? So disappointing about my numbers but I know there are others here dealing with the same thing.
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Candy, remember our ANC numbers are always low. When I take one of my cycles off, mine zooms up to maybe 4.something. But normally during a cycle, it never gets above 1.4, even after the week off. Let's say it hovers around 1.0. The difference between 0.7, 0.8, 0.9, and 1 is very small. And who knows how accurate these values are? Could a tired lab tech make a 0.1 mistake? I assume so. I'd go with your new MO. That's why you switched, right?
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Dye contrast and CTs . Called the facility, and they said no oral dye for the type of scan I am getting (CT pelvic to thyroid) . I used to make vampires smile, but I think with opting for NO port in 2016 and all the poking since then, my veins are just not as helathy. IVs much more difficult and even the last blood draw was harder than normal. So I'm googling on how to make those veins healthier again. Maybe since gym has reopened it is time to start upper body workouts again. Also hoping CT shows more shrinkage.
Rabbit - glad to see your sense of humor return. I usually blame the cat or dog.
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Thank you Jaycee. I just hope my old MO was not on the right track after all and I switched. If I was still with her, she would hold med and maybe give Neulasta. I messaged the new MO's nurse that I am trying to trust her/MO. I just feel weird swallowing the pill and wondering if the numbers are going lower and lower. I wonder if a change in treatment is in my future. I asked nurse about the on 3 weeks/ off 2 weeks possibility. She said no experience with that. Will probably try on 5days/ off 2 days next if numbers are still bad. Wonder why my body is acting like this now-- since May. Maybe getting toxic from the Ibrance? And Covid cases are rising every day in our area. Great timing for my numbers to get screwy.
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Candy, sorry to hear the struggles you are having with the ANC number. I feel the same too, starting around May as well my numbers have gone down. I am in cycle 33.After 2 week break the last cycle, my number was 1.2.
I agree with your new MO to continue the cycle and do blood again in 2 weeks. I think the count continues to increase during the first week of the cycle and drops down after. It’s good to get an idea of the ANC count mid cycle to know how your body is reacting.
My plan with the MO is to continue with 3 weeks on and 1 week off plan. If I continue to need 2 weeks break then we will formalize it. Personally, I don’t see a big problem having an extra week off as long as letrozole is still in place.
Hope you all continue to stay safe and hope to hear more good scan news!
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Candy, Sorry about the low ANC. I think both Jaycee and Thereishope have good perspectives. I think following what the MO said (through the nurse) would be my inclination after reading their posts. It’s a different way of managing a low count but maybe it’s not wrong. I recall a previous conversation where some people said they often started new cycles below 1.
The Covid cases rising is worrisome, but I think all you can do is wear your mask when you go out and I’m sure you do that already. I feel like it’s mostly out of our control, beyond wearing a mask and avoiding crowds. Sorry that’s not a real solution but realizing there’s only so much I can do keeps me sane.0 -
thereishope- So maybe with some--you and me-- that after that many cycles, cumulative effect, our counts just cannot rebound so well. I am starting cycle 32. I would like to do 3 weeks on/ 2 off, but sounds like my MO doesn't want to do that. Keep in touch on what your MO decides for you. You can PM me. I will make a note to follow up with you. Sounds like we are experiencing the same thing.
Rosie- Yep. I wear masks religiously. Stay in house. Do curbside grocery shopping. No in-person church. Had appt for haircut next week, but guess that won't happen. My "outings" are to drive thru pharmacy, drive thru bank, curbside grocery. Only out with people at doc appts. I am about to lose my sanity. I think to myself it just takes 1 exposure to catch it. This is nuts.
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Ginny just to clarify I was diagnosed stage 4 in April 2018. My primary was 2007, so sadly I’m not a long termer. I just hold onto the fact that no-one has been on these drugs any longer than 5 years unless they were on the Paloma trial.
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Hi friends,
Popping in to celebrate the start of Cycle 50 today. I am so grateful to have been able to stay on Ibrance all this time. I've never been NEAD and seem to tolerate Ibrance well, so I've been at 125 the whole time despite low ANC. I feel really good-my friends sometimes say-I forget you have cancer and I laugh because I forget I do too sometimes. I have scans later this month so of course things may change for for now I just feel grateful.
I want to share my experiences to help those who are newer to the drug-and pass along tips I have gotten from others on the thread. Over these past, almost 4 years, I have found my side effects have gotten less and less. Key things for me are:
1) Drink lots of water every day. I try to have at least 72 oz.
2) Exercise-vigorously when possible. It was really hard for me to even walk in the beginning but now I am golfing and playing several hours of pickleball a week. I do yoga almost every day of the week also. Your body needs the exercise to rebuild and maintain strength. Just start doing what you can do and build on it. If you are as weak as I was from the cancer, try exercising in a pool for stability. That helped me to regain strength and balance.
3) Go outside and enjoy fresh air and sunshine. If you are severely fatigued-have your vitamin D levels checked. I did this a little over a year ago and now added more supplements. It has helped with the fatigue.
4) Greek Yoghurt- Hat tip to Pat McGill. This is a life saver for mouth sores. I rarely get them now but if I do it's because I haven't had the yoghurt in a week or two.
5) Eating lots of vegetables seems to also help my energy. During Covid I started making soup-I make this delicious one with broccoli and spinach. I find it easier to digest large quantities of vegetables when they are cooked and pureed in the soup.
Best wishes everyone.
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Chicagoan- I am happy for you. Wow. Cycle 50 !!!!!! And you sound like you are feeling good and staying active. Almost forgetting you have cancer---wow. I wish I could bottle what you have and you could share some with me.
Don't get me wrong, I am happy for you and wish you well.
I just cannot say all that. I don't feel well. Yes, I continue on-- keeping house, maintaining the business of living-- groceries, bills, etc. I started Zoom gaming - Dungeons and Dragons- last week with a group of people. We are going to Zoom weekly. I read my favorite books. I walk on my treadmill. I talk with friends on the phone. But.... I feel cruddy. I am tired a lot. I have these horrid hot flashes--2 days ago it was 3 in a 2 hour span. So... probably 20 in a day, some days. I feel like a tin man when I sit for a period of time and then go to walk. And now, since May, my ANC will not rebound on my week off. This month ANC 700 (and was told to start next cycle---cycle 33).
I need to drink more water-- on average I drink maybe 1200cc (36 oz) in a day. I walk on treadmill maybe 3 times a week. But I hurt so much and feel so tired. My left hip, knees, and ankles hurt when I do the treadmill. Probably need to take Vit D supplements. And I do like veggies---raw dipped in ranch dressing.
I certainly don't forget my cancer. It robbed me of my career, my finances, my health, some friends, and my future plans.
Wow, I sound awful. I am sorry. Just worried lately--- low counts, changing MO's, worried about my future.
Again, Chicagoan, congrats on the milestone of 50 cycles of Ibrance. It is a good drug. I may not have had the 3 years I had without it. I may feel cruddy, but I am still alive. And I had a baseball sized liver tumor when found.
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Chicagoan - Thank you for your post! Glad to hear you're living so well while on Ibrance. I've started making my own yogurt, and I'll have homemade soup tonight after my Xgeva shot. Starting cycle 9 (125 mg) soon. Congratulations!
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Chicagoan - thank you for the post, it gives me hope. I Just finished cycle 11, on rest day 2. Fatigue has been the biggest issue. It has subsided some. I now notice it most when gettting up, not during day or when being active. Once up and going I am usually ok. Tumor R-axilla shrunk 2.5 cm Sept 2019 to 7mm April 2020. Hoping yesterday CT scan shows more shrinking. Nervous, because at last visit, Oncologist brought up surgery. Really worried that R-axilla much more complicated than breast, damage to nerves, tendons, muscles, make lymphedema worse. She supported my decision to see if Ibrance continues shrinking it. Staying hydrated and active, eating healthy. Also enjoy vegies most when mixed into a dish. Trying to make peace with brussle sprouts. I have generally been active most of my life, and except for sugar, eat healthy. Over the years have cut way back on sugar.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. By Sept 2019 after CTs, biopsy, PET , Dx tumor R-axilla, no metastasis. Started Ibrance and Arimidex.
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Chicagoan - could you post that soup recipe? I seem to always have a bag of spinach about to go off and it would be nice to be able to plonk it in a soup than toss it.
Blue Girl - there is no making peace with brussel sprouts. I've tried. I've tried every possible way from here to kingdom come and its totally not possible. Its not you, its them
By the way, Blue Girl - did you ever feel your axilla tumor feel tingly while it was shrinking?
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Brussels Sprouts Chips - I usually can't stand them, but had the chips at a restaurant once. There are several recipes online. I like ones baked with parmesan.
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Chicagoan congratulations on 50 cycles!
I’m at 40 cycles. Side effects vary and I’m on 100mg. I have had the fatigue (main se) mouth sores one time bad but handled with mouthwash etc. achiness, neuropathy, hot flashes, nausea etc.altogether manageable and I’ve traveled before Covid of course mainly bc stage 4 is it and I wanted to do things that were adventurous. I’m in my 60’s now but I was active up to this stage 4 diagnosis. I force myself to do things when I’m tired bc I know I’m not going to sleep and I can be tired at the park or wherever. I did make an appt to see a counselor from my cancer center. It will be a virtual session on Monday. I do have bouts of sadness mainly at night in the dark alone when my mind starts tripping.
Candy you are young and whatever SE’s you have are unique to you. Sending you an air hug. I’ll let you know if the counselor is worth it. I know there are a few ladies that take meds for depressed mood etc. this diagnosis is enough to send anyone reeling. Take care.Tanya
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Sondra-Here's the recipe for Broccoli-Spinach soup. I adapted it from the Taylor Farms organic broccoli bag. (I buy the broccoli already cut up which makes things even easier). It takes 20-30 minutes to cook with minimum prep. This makes about 4 large bowls of soup. I usually eat it as my lunch.
1. Chop up one onion and 3 cloves of garlic
2. Saute the onion and garlic in 2 T of butter.
3. Quickly stir in 5 T of flour once the onions are soft.
4. Add in 4 Cups of Chicken broth and 1 Cup of Water.
5. Add in 6 cups of chopped broccoli- and cover. Cook for approximately 8 minutes until broccoli starts to get soft.
6. Add in 4 Cups of Spinach and cover again.
7. After Spinach is wilted, add in 1 Tsp of salt and 1/2 Tsp of pepper and stir.
8. Add in 1 Cup of Milk.
9. Puree with blender until smooth.
Enjoy!
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Chicagoan you had me at onions and garlic!
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Sunshine-The original recipe didn't have the garlic but I think it make the soup soooo much better!
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Chicagoan - that looks awesome. I may pop in some bone broth to juice the nutrition a bit. Not super keen on the milk, but I bet I could sub in coconut milk and be ok, and it would likely work great as a chilled soup? Ive got a bag o spinach in my fridge now and bloods coming up, so I am going to give this a whirl next week. I like to eat breakfast/take pills late in the morning so usually don't want to have a big lunch or eat it id afternoon, having a half cup or cup of this on hand would solve several issues!
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Tanya- Did I misread your comment in your post--- " Candy you are young and whatever side effects you have are unique to you " . You mean, they are NOT unique to only me. That you too experience fatigue, achiness, hot flashes too. I was 47 when diagnosed and was still having periods. My body was not ready for the "change". And now I am in chemical menopause. Yes I am 49 (soon to be 50) but my body feels older.
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Sondra-I like the idea of using bone broth-I might try that too. And the soup is good chilled as well as hot. Using cocoanut milk sounds intriguing!
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candy I think the majority of us feel fatigue with the ibrance. I think exactly what you’re feeling is unique to you- whatever level it is. Some days are better or worse than others. I traveled a few years ago with my mom who’s in her 80’s and we moved at the same pace. I pray you have a better day today.
Tany
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Hi Tanya,
I've only recently been diagnosed with bone mets in June of this year just after turning 62. I'm half-way through my second cycle of Ibrance and letrozole and I also feel fatigued at times, especially during the day while working. I get hot-flashes also, but have experienced them over the years, since I was thrown in to chemical menopause in November of 2009 due to chemo. I've always felt that chemo takes years off your life and slows your pace, but the advantage for me, was being able to relax more with friends and family and not worrying about whether or not my house was sparkling clean or not. My cancer diagnosis helped me realize how important it is to connect with friends and family. I used to rush around doing stuff like household chores and home projects, but now, with the exception of COVID-19, I try to plan more time with my family and some friends even if its just to watch a Netflix series. I feel its important to take time to smell the roses! I also have trouble initiating sleep at night and have learned the importance of napping in the afternoon regardless of what needs to be done around the house. Of course, if I had small children, I wouldn't be able to do this. Anyway, I agree, that some days are better than others and I try to stay positive. My MO told me that positivity is the best medicine and believe that to be true. While my initial cancer journey had many ups and downs along the way, there were many positive things that came out of being diagnosed with cancer. Also, I met the most amazing and caring people and saw a different side of the world through the connections I made. My experience changed my life for the better!
BTW, I have had one other new symptom, a feeling of dread comes over me from time to time? It doesn't last long and I question myself about it because there is no trigger for it. I've been on Effexor XR, the lowest dose, since 2011, I don't think it is anxiety related. Could it be a side effect of Ibrance? Its very weird, kind of an all over feeling, both mentally and physiologically and I just can't figure it out since I can be in the middle of working and concentrating on what I'm doing when it occurs. Anyway, if anyone else has had this feeling, please let me know.
Candy: I wish you many more good days than bad. Also, I asked my MO about my WBC and it went down to 0.9 after the off week and took two more weeks to get to 4.9 so that I could start my second cycle of Ibrance. Met with my MO last week and asked if I would experience the same thing this time and was told that Ibrance is very unpredictable when it comes to WBC and ANC and that it could be that my body just needs to adjust to it. Here's hoping I don't drop to 0.9 again.
Praying for all you lovely ladies!
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SondraF – I don't feel anything with the axilla. Don't feel it shrinking. Did not notice it growing. My right arm had swollen, opposite side where lymph nodes removed. Urgent care suspected clot. Ultrasound saw lot of fluid, no clot. More scans and biopsy found tumor
Katrose – the first few cycles lots of fatigue. Just finished cycle 11, rest day 4. Fatigue not as bad now, mostly when I first get up. Blood counts low but don' change much. Cycle 12 I will drop from 125 to 100. Oncologist said that studies are showing that 100 would be just as effective for me. Feeling of dread might be the cancer experience itself, just wanting it to be gone, rather than a particular drug
Serenity and Chicagoan. Thanks for brussel sprout ideas and spinach soup
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Katrose, by chance do you have a hot flash after the feeling of dread? You may not have what I experience before the hot flashes come on, but nine times out of ten I can tell one is coming because about 30 to 45 seconds before, I get crazy anxiety. It is not something that lasts. It only lasts less than a minute. I will start to feel anxious and wonder what's going on and then realize I'm about to have a hot flash. I have anywhere between 8 and 15 hot flashes per day, and that's not including the middle-of-the-night ones. I had those before my diagnosis. I've had them for about six or seven years.
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I also get that weird squirrelly feeling. Sort of a sick sense to my stomach like I was forgetting something really important and then I get relatively warm/flushed about 20 seconds later that lasts about a minute. I mostly get a hot flash after eating, after taking my meds, and for whatever reason without fail every night when I turn out the light to go to sleep.
This all makes my mothers anxiety through her own menopause make so much sense now!
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Sondra, you hit the nail on the head. As soon as I lay down to go to sleep, I lay on one side. I then have to roll over to the other side. Just the way I’ve always done it. As soon as I roll over, the sheets have to come off because the hot flash comes right before I go to sleep. Goodness. I didn’t know this happens to others. And the feeling you get right before the hot flash also is exactly right. Sometimes I forget this happens, and I feel like complete crap and then realize a hot flash is on its way. Wow, amazing what we learn about each other. I didn’t know anyone else this happens to.
My mother and sister got past the hot flash stage with one or two total hot flashes. I guess I’m the lucky one who got the ones they never did.
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katrose yes the overwhelming feeling of dread. It is followed by a hot flash. I’m going to try to pay more attention to it. I love your dancing in the rain scenario.
Tanya
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