Side effects

[tmoews]

I've been taking Ibrance and letrozol since 2016. I started at 125 and now I'm taking 75, I'm still having trouble with my absolute neutrafils. Any suggestions?

[theresac1]

Hi All, I have been on Ibrance 125mg, and Femera for 18 months . I have tolerated Ibrance very well. My WBC is typically Mild Neutropenia. The most significant side effect from both medications is joint pain in my hands. My grip has really reduced. I think this is from the Femera though. By the end of the week ( I work full time, teaching, and get up at 5:30- get to bed around 10:30pm) I am tired. I also have tingling in my feet. My hair has been thinning. If I put my hair in a pony tail, it looks pathetic. The thickness of my hair is sad. One of my students asked me recently "Mrs. C., Why is your hair so thin?" I was sad, even tough my family tells me that my hair looks fine. I can't see my scalp (thank God), but my hair has really thinned out. I take Biotin every night to help strengthen hair and nails. I juice (greens/veggies/fuits/ginger), eat a whole food plant based diet, don't drink alcohol, and avoid dairy. I take calcium, tumeric( cucumin), Vitamin D and K, Greens with probiotics, and vegan protein shakes. I have not given up my coffee. I have to have that! I hope many of you will find that Ibrance will work for you and keep your cancer from progressing. So far, thank God, I have had no growth since May 2017 and feel pretty good. Love and prayers to you.

[Barbteeth in reply to theresac1]

Hi Theresa

I have awful joint pain and live on painkillers

As for the hair thinning..I’ve had extensions put in mine..looks amazing..worth doing if you’re vain like me!!

I take supplements but have been told not to take biotin as it can interfere with tumour markers so I stopped it and my nails are atrocious

I’m on 100mg Ibrance with letrozole..hate it all but no choice is there?

I do drink coffee and alcohol and eat a mainly vegetarian diet..I’ve recently bought a juicer and experimenting with it

Also seriously considering an infrared sauna..they’re on amazon for about £300 and are portable..sick of bone pain

All the best to you

Barb xx

[mariootsi in reply to Barbteeth]

Barb, let us know how the spa works for you.

[Barbteeth in reply to mariootsi]

I will..it should arrive on 6th February..my birthday pressie to me!!

Barb xx

[theresac1 in reply to Barbteeth]

Isn't it strange how many different answers we get from our doctors? My doc, said that Biotin was okay. ??

[Barbteeth in reply to theresac1]

I did google it and it can affect markers..as you say there’s so many conflicting information..confusing

Barb xx

[Mimigram in reply to Barbteeth]

Which infrared sauna on amazon are you thinking about? There are lots of choices.

[Barbteeth in reply to Mimigram]

Hi Mimi

It’s the Firzone one with tourmaline..it’s the bright blue one in the photo..it’s amazons choice so I just went for that one and allegedly the tourmaline increases the effects of the infrared..if you believe everything you read!!!

It seemed a good make though..no point in getting a cheap version as can end up disappointing

Barb xx

[Mimigram in reply to Barbteeth]

Thank you, I will check it out.

[PLASEM in reply to Barbteeth]

Yes shows us what kind and it works my pain is getting worse and I can not sleep take care

[Barbteeth in reply to PLASEM]

I sleep ok but pain kicks off after an hour or so if getting up and any exercise just makes it worse

What a way to live

Barb xx

[Hidden in reply to PLASEM]

Do you take a prescription pain med? I couldn’t survive without mine. I was iffy on using it but my doctor said it makes no sense to be in pain

[PLASEM in reply to Hidden]

I take it sometimes it make me feel too sleepy, I applied local creams

[Benoahmom in reply to Barbteeth]

I start Ibrance tomorrow. Currently on Letrozol. I do not want to quit drinking alcohol! You still drink then? What does your doc say?

[Barbteeth in reply to Benoahmom]

Yes I drink..mainly wine or gin..not every night!!

My oncologist said that’s fine

Barb xx

[Rbabak in reply to theresac1]

Hi Theresa,

I was newly diagnosed about 3 weeks ago. I want to do everything you are doing in this email. Can you recommend the probiotic you are using and or vegan shakes? I start ibrance this week. Also, why do they start you on a high dose?

[Hidden]

I wish I could help. After one year I still have to wait three weeks for my neutrophils to get back to a safe level before starting my Ibrance for the next cycle. I am at 100 mg now but my doc doesn’t want to drop it down as he isn’t sure if that will make any difference. Good luck.

[PLASEM in reply to Hidden]

That is really good that with 100 mg your scan still stable, my oncologist has another approach, my dosage was 125 mg my neutrophils are going down till 0.5 I usually get two shots of Neupogen on my week off then the neutrophils goes up and start again my oncologist said that even our neutrophils are low He does not see his patients getting infections he said but if you want to wait for your neutrophils to go up on its own probably you will at least three weeks because it is worrisome

[Hidden in reply to PLASEM]

My oncologist makes me wait. I will mention this Neupogen. I’m in Canada but assume it is here also. I asked him about injections to help them and he didn’t know what there was and told me to ask you folks.

[Nannymop]

Hi have you asked if you could have neupogen shot my white cells were low Every month but I just have one shot now and been good to go every month since, been on treatment for 13 months x

[theresac1 in reply to Nannymop]

What type of shot for white blood cells?

[Nannymop in reply to theresac1]

Hi on my week off I have one injection at home called neupogen it is a white cell booster my neutrophils were always to low and would have to take extra weeks off but since having injections last 3 months they have been good . Hope all goes well for you x

[mariootsi]

My palliative care doc gave me wheatgrass powder to take in water or smoothies. Supposed to be great for blood. Ask your onc if that might help. I'm having low platelet counts but wheatgrass is just really good for us. Check it out. Good luck! Love Marianne. It's frustrating I know when low counts happen!

[theresac1]

Really? Do you know in what way it affects the blood work? I wasn't told that.

[theresac1]

Thank you! I just looked up on the internet too. I had no idea! Crazy!

[blms]

So my question is: if you are not having your tumor markers checked and have no cardiac issues, then what is the problem with high doses of biotin? I don't really take it on any kind of continual basis but curious now.

[Mimigram]

My oncologist said to climb a flight of stairs right before getting your labs. Apparently it raises them.

[Barbteeth in reply to Mimigram]

Raises what? Wbc rbc markers??

Sorry don’t understand this

Barb xx

[Mimigram in reply to Barbteeth]

Both is what I am assuming. My WBC was low and she mentioned that to me.

[Mimigram]

How much Biotin do you take? My multi vitamin has it listed at 1000 mg

[Mimigram in reply to Mimigram]

Mine is 1000 mcg. I read it wrong. I think I will stop 48 hrs before labs which is what I read.

Thank you for your response.

Mimi

[blms in reply to Mimigram]

I had heard that 10,000 mcg. Was the dose for growing hair. But I rarely take it all now as I am taking a high quality vitamin b which has not even close

[PLASEM]

I will do climb stairs I am going to have my labs on the 13 of February I did not know that Biotin affects the cancer markes

[barbarac76]

Hi. How low has your Abs Neu been? I've been on Ibrance (125mg) and Faslodex for two years. My Abs Neu has been consistently low - between .6 and 1.2 on the third day of my off cycle. More often, it's been below 1.0. My oncologist has not made me skip any days because she says that although the number is low (as is my wbc and platelets), I haven't had any infections. Maybe a minor cold once or twice.

[hdhonda in reply to barbarac76]

My onc says same thing. I don't skip a week even when they are very low. They come back up on their own and I haven't been getting sick. They are never normal. I doubt that I will ever be normal again. Blessings, Hannah

[tmoews]

My abs neutrafils seen to get low every month. Last week they were 0.8. I am only taking 75 mg of Ibrance. I am interested in the neupogen. Have

you tried vitamin c infusion?

[klhowe in reply to tmoews]

I started on 125 mg Ibrance and Femara last June. After 2 weeks my ANC was 340, so I had to wait 3 weeks and start on 100mg.

I have passed ANC without problems for last 5 cycles. I eat a protein rich diet. I have quinoa cereal every morning and a vegan or bone broth protein shake every nite. And Immupower which is a supplement (you can find on Amazon) that helps people undergoing chemo.

[tmoews in reply to klhowe]

Do you have a recipe for the quinoa cereal?

[klhowe in reply to tmoews]

Ancient Harvest Quinoa Flakes, I buy it on Amazon. I cook it. I like to add cheese, but you could add honey, brown sugar, fruit.

[tmoews in reply to tmoews]

Immupower is from young living??? Do you diffuse it? Anything else with it?

[klhowe in reply to tmoews]

American BioSciences

ImmPower 30 Capsules

Look it up on Amazon, I finally gave in and put it on subscribe and save to get it cheaper.

[tmoews]

Thank you so much!!!

[Healthy44ever]

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