Today, one week after my CT scan and delayed bone X-ray, I was told by my Onc that my wbc count is too low to start up on Ibrance again after one week and one day off. She is going to wait till next week after another blood test and she will drop me down from 125mg to 100. She also said that my count was 7 and it’s not high enough to start up again. Does that mean -7 as I know it’s got to be over 0 or 1 to be able to go back on to your regime. Is that correct?
Also..... I’m feeling really low, in energy. Not spirits. She said that there are no new bone lesions. (I was sure that my skull lesions had grown as the ones on the right side at pe hurting more and more, as I’d my spine.)
So anyway, these results are good huh? This is my 12 month mark. Feeling happy, but soooooo tired. Mouth ulcers. Etc.
Even though I’ve been drinking juices and eating really well, I still feel so lack lustre. Going to try to just rest up and eat good iron type foods. Dark greens, nuts, seeds, etc to try to get stronger. Yes?
Anyone got any good ideas or thoughts for me?
Hoping you are all going well.
This photo is the view from the day centre where I have my Denocumab injection. Peter MacCallum Cancer Centre Melbourne. A cold but clear sky day.
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Timtam56
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Hi, I'm on Ibrance 100 mg since July 2018. My wbc dropped so low with 125 mg in June, so my Inc lowered the dose. Things have been stable since then. I've been trying different things for low wbc or more importantly neutrophils count but nothing worked - lowest neutrophile count each month has been about 0.7. I just got my bloodwork done 2 days ago and for the first time, neutrophils counts is within normal range (2.2)! The only thing I did differently is -- I've been eating one tablespoon of organic blackseeds (nigella sativa) and organic reishi mushroom supplement everyday in the past 20 days. I also have been doing contrast showers (5 minutes under the hottest possible water and then 30 second coldest possible - repeated 2-4 times). I freshly grind black seeds right before I eat - supposedly the most beneficial form. Also, I know a friend who has been on Ibrance/metronome since 2014 and she was able to tolerate 125 mg for few years and then they had to lower the dose to 100 mg.
I take vitamin B12 5000 mcg and folic acid daily. It really helped with fatigue right away for me. I am on plant based diet but include fish (as family member is fisherman) 🐟
Try B12 shots monthly from primary doc. They seem to help me with energy.
Hi Tam,
I'm not on the same regimen as you, so I can't comment on that, but I hope you will soon be feeling better and have more energy. When you mentioned how you have been feeling, what suggestions did your oncologist give you? Did she suggest any supplements or anything else that might help with your energy levels? It's good to hear that there are no new bone lesions, but it would be helpful if you could have been given some practical advice on how to improve your energy levels too. I would take some time to rest up over the weekend and put your feet up. I find a nice foot soak or an Epsom salts bath really soothing, and plenty of sleep too.
I know! Right Soph? It’s really strange. I’ve asked her a couple of times about vitamin c or supplements.... but she always says she doesn’t want me taking them as they may interfere with the good work that’s happening with my results. She’s a leading researcher here in Melbourne top cancer hospital. I have a great relationship with her and can ask her anything. But this is something that seems to confound me.
I’ve just started on vitamin C as I think that may help with my sinus and asthma at present.
Damn. I wish I had a bath here at home. I’d love a soak in this cold Melbourne winter too.
I'm sorry you didn't have any joy with your oncologist. The only supplement mine recommended was Adcal D3, and I have been on it ever since my GP prescribed it. As you don't have a bath in your home, how about investing in a heating pad or an infrared sauna? I used an infrared sauna when I visited Iceland in January and I loved it! Hopefully you will get through the winter well. It's been hot and muggy here lately. I would gladly trade with you! I don't like the heat.
Ps. For instance. Today I asked her about prognosis. And I know a lot of you here don’t want to know about this. But it felt really good to have the discussion. And she was so honest even in her not being sure.
But th supplement thing is obviously not her scene.
I find that physical exercise helps with fatigue. Believe it or not. I do deep water running - water aerobics in deep water with a flotation belt - twice a week and Pilates twice a week. Sounds count intuitive but I actually feel less fatigued.
Not to everyone's taste, or mine really, but I find eating liver and kidney really helps if I'm feeling fatigued. As well as staying really well hydrated, taking a nap if I need to but otherwise staying active without overdoing it. I also take vit b12.
Neutrophils have to be above 1 to take Ibrance... otherwise the risk of infection is too high as for feeling tired I’ve never been an eyebrow it’s almost a year and a half and I’ve gotten used to a new self this self this feels tired and for the first time in her life takes naps on occasion I’m presently traveling I’m in Newfoundland Canada and spending a fair amount of time on the bus and I’m really missing the exercise I normally swim 3 to 4 km a week and walk my dog around an hour a day and I’m really missing the exercise and noticing that I’m feeling even More tired than usual
Sorry you are feeling so low. With low wbc you will feel tired. My onc doesn't talk about supplements either but my palliative care doc gives me B12 shots and gave me a script for folic acid. She said they work together. Also she gave me wheatgrass powder to help bloodwork.
My onc only told me to take Vit.D.
You may want to see a palliative care doc. They seem to be more open and knowledgeable about supplements.
Congratulations though on a good scan!
The lower dose Ibrance should make a difference also. I just know it did for me.
Get some rest and the longer break from Ibrance should help your count recover.
Thanks everyone. I’ve been low before but never quite this bad. Doing it very tough this last few day. Probably also because I just had the Denocumab injection. Always make me shivery and shaky. Like I have the flu. Rest rest rest.
So great having you all there. I do appreciate it so much. ❤️
I got the same report this week . Thankfully this fantastic groups shared information on previous post helped me not panic with the change in dosage. Oncologist actually said I am surprised we didn’t do this sooner . For now I will enjoy fewer medications for another week . And carry on .
Mine said the same. She actually said....”I don’t know why I didn’t suggest this sooner, as your bloods are continually to low each month.”
Oh dear! Well. Here I am today on a Sunday morning, on my own in the house, and had two visitors coming by today, and I’ve cancelled them both. I’m just going to stay in bed. All I can think of is resting. Lucky it’s a gloomy cold day out there. Not one that makes me feel I should be out and about.
That has happened to me more than once. I have good days in which I try to get things done as much as possible, cleaning, food shopping and then unexpectedly I will have a day I am just exhausted. Hard to make plans with people bc twice I had to cancel plans I had bc both days I was just exhausted and I didn't feel that way until I woke up the same day I was supposed to have the plans. I find that frustrating a bit.
Hi I was wondering how you are tolerating the lower dosage of ibrance ?
I had 2 weeks off ibrance , lowered from 125mg to 100mg did 21 days 7 days off . Just did my blood work and have been postponed another week . Blood counts are still down .
I was only just on 1.0 with my WBC's this time around one month after starting new dose. Same as you with the 100mg X 3 weeks on and 1 week off. My oncologist was happy that i just scraped it in and now.... I have begun on time, my next month. But I am never complacent about this.
Also, I have the added problem of migraines and headaches and tingling in the legs. So. I have been put on the waiting list for a MRI. They are worried that the tumours are pressing on the spinal nerve, and or the skull cap tumours are causing the headaches somehow.
You know. I don't mind. I am so calm about the fact that I may get worse quickly or I may have years of an okay life. So I am willing to just go with the flow. I think my family and friends are sometime more worried about it than I am.
Hi, My name is Carol. I too was on 125 mg Ibrance then dropped to 100mg I've been off altogether 10 days now and 9 more days until I see the doctor. I too feel soooo tired. I worry with all the pain things are not good, but I try to trust God has a plan. Good luck to you.
I, too, started off on 125 Ibrance. After one month, I started to have terrible shortness of breath. Counts were low, both RBC & WBC. Sheer exhaustion, could hardly make it from the bedroom to kitchen without huffin & puffin. At next onc appt, he listened to my heart and heard some strange sounds. Took me off the Ibrance and scheduled me for a echo-cardiogram. Found out that I had 60 % mitral valve leakage. My onc lowered dosage to 100, but no relief from the shortness of breath. Both the cardiologist and onc thought the heart issue "could" have be bought on by my prior chemo regimen 16 yrs earlier. After about 3 months the heart issue was finally resolved by putting in a mitrol clip on the mitrol valve which almost immediately stopped all the shortness of breath. I was still taking the 100 Ibrance. Had a month off while the mitrol valve surgery was being done. Soon as I started the Ibrance again, all the low counts came back, along with other Ibrance side effects. My surgery was last September, I just couldn't seem to shake the Ibrance haze. So last month my onc has me on 75 mgs. Different regimen, one week on, one week off. I have an appt next week. I am anxious to see how my counts are then. I really think that they (meaning medical estab) know that it doesn't matter if you are on 125, 100 or 75. What my onc is trying to do is make my quality of life as free of the horrible effects as he can, or at least make it less debilitating.
It’s sad, isn’t it, that we have to go through such full on experiences of low energy, ulcers, not being able, as we once were, just to keep going? (I’ve been feeling really sad and lost lately. Feel like I’ve lost my mojo even though I keep struggling to find it.)
It’s swings and roundabouts I guess.
I still feel lucky, that after having been misdiagnosed for 8 months by a negligent uncaring doctor, with shocking spinal, rib, hip and skull pain, that I am alive. My onc said if we didn’t catch it when we did, it would have been a matter of months for me.
So. I’m still alive. I can do some stuff. Not all. But what I can do can still be quality if I put my mind to it.
I’m looking forward to a trip to the Western Australian (Outback) beach next week. So hopefully my count will be back up, and I can do some small walks, and swim in the reef off the beach. Unfortunately I won’t be able to swim with the whale sharks as my recently deceased partner and I had planned for. But I may go on a glass bottomed boat. And, I hear that you can still see amazing stuff that way.
So, I now know I can’t run for the tram, as I did last week for about 7 metres last week. I thought I was going to die when I finally got on the tram. Everyone was staring at me and probably thinking they may need to call an ambulance. I won’t do that again! 🥴🤒😥
I can’t stay out too late at night.
I need rest during the day.
I get very depressed, but try to keep above it.
I am now intent on making the house, my partner and I lived in together, my own. Allowing myself to buy some nice furniture, or bed linen etc.
What ever we love, and can do, is what we should be doing.
Oh-I’M feeling just like you. Trying my best to put a happy go lucky face, but seem to losing ground. Some good days some bad. Most of the time just kinda there. Actually my last scan was good having another one in August. I have a great Dr who tells me how well I’m doing and not to worry that all is OK. And if anything comes up we’ll deal with it. I don’t want to have my own pity party-I feel you understand my feelings. Have a wonderful trip. Enjoy it all!!! Take it all in. Breathe!! Come home rested and ready to face the new life you are making. (sorry about your partner) This May be the best medicine of all. Have fun and take care Chris. Kykakeke - (Chris- my name too)
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