It’s seems I just can’t win. Neutrophils are too low to have chemo tomorrow so delayed a week. I was hoping it was just the Ibrance that was causing the issues but I guess my bone marrow doesn’t work very fast. I did feel like a had a virus half way through so I guess that caused the problem. From here on whenever my husband or daughter have a slight cough or tummy ache they are being quarantined lol. I hate delays as I always picture the cancer invading a little bit more.
Chemo delayed due to low Neutrophils - SHARE Metastatic ...
Chemo delayed due to low Neutrophils
Thanks Sandra. I will be fine tomorrow but just so disappointed today. I plan my month around chemo and how I will feel during each week. I hate having things messed up. I’m the back of my mind I see how quickly things progressed when my Ibrance kept being delayed so my brain automatically thinks the same.
We are with you stay strong
Oh, I know the feeling Sarah. I started out trying to take Abraxane 3 weeks in a row. That never worked, I did 2 weeks in a row a few times, now it's every other week with fingers crossed that my neutrophils will be high enough. My oncologist suggested that bone mets might be making it harder for the bone marrow to bounce back. But even with fewer infusions the chemo seems to be working on the cancer; I was told even once every 3 weeks could be enough.
But it's still a pain to change schedule. I'm already planning to see grandsons in August on my "off" week and don't want that getting messed up if I have to skip a week. Hope you can rework your plans for the month and get it next week.
Can I ask how high your neutrophils have to be to get chemo? I know we are on different types. My oncologist said she'd be okay if they were 1.0 but with COVID still raging here I asked her not to go below 1.3 and she agreed. I don't want to know what they are on the week I'm "off"...that's when they are supposedly the lowest. The one time I got it checked they were 0.4!
Take good care,
Patty
He wants mine to be 1.5 for chemo. With Ibrance it was 1.0. It makes sense it is harder for the marrow to make more neutrophils when the bones are affected. I have so many mets to various bones.
You mention you were in Abraxane 3 weeks in a row. Do you mean Ibrance ? My chemo is Abraxane and it’s every 4 weeks for me while others seem to be every 3 weeks. I understand why he kept mine at 4. It’s hard for a med to work when your body can’t stand it.
When I was taking Ibrance my neutrophils would be 0.4 after my week break. It really kicked my butt.
I hope you can see your grandson soon ❤️
1.5 for chemo sounds good. I am on Abraxane; I never actually got to 3 weeks due to low counts, but I did 2 weeks in a row a few times. I think my dose is quite low though; perhaps yours is higher and that's why it's every four weeks? I'll ask when I go in tomorrow. I think they dose based on BMI, but my dose is even lower than that calculation.
I have a lot of bone mets too, but it's the liver ones we worry about more. So far my liver numbers have been fine, but if they get too high I think I'll need to reduce dose. Such a balancing act!
Weirdly my hair is starting to grow back. It's a fine layer of white right now, I'm curious about how long it will get. At first I was worried that it was growing because I wasn't getting enough chemo, but apparently that's common after several doses of Abraxane. Wish my eyebrows would grow back too....in a perfectly arched line! Ha!
I will ask next week what my dosage is. I am a lot bigger than you, looking at you picture. My hip was such a mess (1 1/2 years before diagnosis) and then another year for hip replacement surgery I haven’t been able to walk farther than the bathroom. I have packed on a ton of weight 😞. It drives me crazy when people look at plump me and say “you look good” makes me want to scream.
I have a short fuzz on top of my head and just like you I worried it wasn’t working. Maybe we could grow enough to cover our scalp lol.
Take care ❤️ Sarah
Hi Sarah! I had my Abraxane IV this morning and got a little more info about dosing. I get 132.5 mg. every other week. The dosing equation for weekly or every other week is 80 mg. per meter squared. I asked the nurse about monthly dosing and she printed off the dosing sheet for different cancers, which shows the "usual" dosing equation for MBC to be 260mg per meter squared every 3-4 weeks. My weekly infusions are considered "off-label" dosing. This makes me think that you are getting a larger dose when you go in monthly, but it probably evens out to be about the same amount of the drug. My cancer is ER+, HER2 negative; they mention different dosing for triple negative.
I also asked about my liver enzymes ALT/AST and Alk Phos, which always run high. She said they can be up to 3x the highest "normal" level before we'd need to stop Abraxane. Mine aren't double yet so I guess I have a ways to go.
Hope that helps you, I know it helps me to have Abraxane buddies here! I'm sorry to hear about your hip issues. I have so many bone mets but amazingly haven't had any breaks or major pain problems in these three years. I'm on Xgeva every 3 months, hope I can stay on that a bit longer too!
Enjoy this week off as much as you can!
Patty
Thanks for all the info. I will ask Wednesday what my dosage is. I was sure I wrote it down but can’t find it now. My cancer is obular ER /PR+Her2-
-AE1 positive
AE3 positive
CK7 positive
CK20 negative
er positive
mamglobon positive
GATA3 positive
Not sure what half of that means but I wrote it all down off my biopsy.
I’m glad your liver enzymes are at good even if they are a bit high. There is always a range that is normal.
Having a tired and out of it day but one of my dogs was scared all night, shaking and panting over the thunder storm we had last night that kept circling back around. Poor thing was shaking so bad the whole bed was shaking. She stayed between my husband and my pillow and she is a 70lb husky. Didn’t sleep a wink till after ten this morning.
I had chemo today after a weeks delay due to low neutrophils. My dosage is 494 mg once a month. I remembered to ask 😉
Frustrating indeed! I agree that you should do something extraordinarily fun with the bonus time!
Thanks. Now I have to think of something fun to do that is safe with Covid.
I have to wait 2 weeks to start my chemo tablets, on the one hand I wanted to get started but on the other hand not looking forward to side effects, good luck
Oh, Scarcie, I'm sorry about the delay! As the others have suggested, maybe you can do something enjoyable with the week? Maybe like make it about getting extra rest, doing some at-home spa treatments, etc., to help your body and mind bounce back?
Take care,
Lynn
I slept in this morning. But then, I sleep in every morning lol. Maybe I’ll paint my nails and make myself pretty for chemo lol. Thanks for the support 😘
I am in the same boat , my 100mg ibrance was delayed an extra week due to neutrophils . My counts have been low for a few months, in my scanxiety brain I had assumed it was a medication change time . But my scans came back ok .
Have you had any dosage reductions ?
If my bloods are not up today I was wondering about asking to try the 75mg .
I hope your levels come up and you are able to start your ibrance again .
It is a pain when we have our lives all planned around this beast and then it makes everything change again with schedules.
Sending positive thoughts to you
Luann
I am having IV chemo now due to progression but when I was on Ibrance I always had a three week break to build my neutrophils back up. I would definitely ask about the 75mg. It could get you on schedule which is what we all want. Best of luck.
Thank you for your reply , it is nice to hear from other people that have experienced this.
I hope your chemo is gentle on you and is blasting those darn cancer cells.
Thank you ❤️
I agree with Sandra. A week won't make much difference. Hoping all goes well Trying to think what you could do for fun, however, options are limited at the moment for you. Do you juice? Maybe try that if you have the energy. Hopefully it will give you energy! Sounds like your body could use some help. Anyhow, I am thinking juicing, plus having some homemade soups might slow the weight gain and /or take some pounds off.
As I have mentioned before here, I am not a fan of supplements but Dr. Oz swears by his juicing for feeling good. I also have said when I was told to drink lots of water, limit sugar and salt. I did and lost 20 lbs. with no extra exercise.
Enjoy when people say how good you look. Nice! We are own worst critics! Hard to get motivated when you don't feel well. Wishing you all the best. Keep posting. We understand.
Cheers, June S.
Hi June,
I was getting lazy with juicing, as I couldn't be bothered with all the preparation and clean-up each day. It just seemed like a lot of work when I have to get up and ready for work each day. But I have devised a new plan which I am finding easier to manage. So now I will wash, cut and store the vegetables (cucumber, kale, celery etc) the night before, and leave the apple for the morning so it does not turn brown, and measure out the powders (chlorella and spirulina) and put them in a small pot ready for the next day. So in the morning all I have to do is cut up the apple, add my oils and it is soon ready. It is also easier for me to take the chlorella and spirulina this way, as I was struggling to take it in water. It tastes awful! Then I quickly wash out my juicer ready for the next day.
I stocked up on more celery, cucumber and kale this afternoon, as I am getting through it at an alarming rate at the moment. My energy levels are normally pretty good, but since I started juicing every morning this week I have had an extra spring in my step. By the way, I don't just have a juice for breakfast. I tried just having a juice and it isn't enough to satisfy my hunger. I still have my oatmeal, with fruit, flaxseeds and chia seeds. I used to add almonds or walnuts too, but I have found that to be too much now I am juicing more, so I will have the nuts later in the day.
If you are thinking of juicing I would definitely recommend it. My juicer was such a great investment. I am so glad I bought it.
Sophie
Hi Sophie. When you get a chance would you send me the ingredients and the amounts you use to juice. I don’t know where to start. Thanks ❤️
Hi Sarah,
I'm off to bed soon, but I will email you tomorrow when I get home from the hospital. I've got my infusion first thing in the morning.
Talk to you tomorrow,
Sophie
Sounds great. Good luck with your infusion ❤️
Hi Sophie, I didn't realize you went to work. You are doing well to manage all that. I am still on the fence about juicing but I do believe it could be beneficial.
Cheers, June S.
Thanks June. I was going to start juicing and borrowed my sisters machine but it was missing parts. I have been adding a green powder to my smoothies. I drink a lot of water but I haven’t avoided sugar although a naturopath told me I had to avoid all sugars. I don’t see her anymore as she was really strict and very big believer in all the supplements. That may work but it is also crazy expensive. Maybe I will buy a juicer and give it a try. My energy comes and goes. ❤️ Sarah
I agree with the expense. I didn't realize you had to buy a juicing machine. I thought a blender would do. My energy comes and goes also. Some days I am useless and others I am able to do quite a bit. I wasn't told to avoid all sugars. That seems a bit harsh. But I was happy to cut back. Just habit for me. That is when I started making oat cakes. They are working great. Every once in a while I splurge on something richer and now in summer I love an ice cream cone.
I hope things settle down for you and you start feeling better. I am fortunate that so far the pain meds work pretty well.
Cheers, June S.
Yes, a juicer gets rid of the pulp so it isn’t super thick. Eating all the veggies would be better but I don’t think anyone would eat that many Greens in one sitting lol.
The naturopath I saw was really adamant. There are more around so I might check one of them out. I feel that nutrition has to be reasonable for people to be able to follow it. Covid has cut out all the classes that the Cancer Centre normally had which makes things more difficult.
I’m sorry your energy levels fluctuate but it’s good to know it’s not just me. If you get a chance would you share your oatcake recipe again. I know you did before but I’m useless finding things. I love oatcakes. My daughter works at The Second Cup near us and they have a new supplier of baked goods. Their oatcakes are really good but expensive. I need to start making them myself.
Take care ❤️ Sarah
Thanks Sarah. I think the energy thing is because of the cancer meds. I do eat a lot of vegatables but juicing would be better I think. A power house. Yes, I will add the recipe for Oat Cakes here. They are pretty easy to mix up and then you just press the dough out on a large cookie sheet. A rolling pin helps. I don't have one so I use an empty wine bottle that I keep in the fridge.
It needs to be about 1/2 to 1/4" thick. I use parchment paper because it makes clean up so easy.
Cape Breton Oak Cakes.
2 cups of Flour, 2 cups of rolled oats, 1 cup of brown sugar, 2 tsps. of baking powder, 1/2 tsp. salt. 1 cup of shortening, (or butter), 1/2 cup cold water.
Mix the dry ingredients. Rub in the shortening with fingers until crumbly, (or use a knife), Mix in the water. Press on a large cookie sheet or you can roll it out and cut in shapes if you like, 1/4 to 1/2" thick. Mark with a knife into squares. Bake at 350 degrees, 15 mins.
I usually have them with a cup of tea just as they are. They are just slightly sweet. Or you can use them as savoury biscuits and spread with cream cheese or butter and jam, peanut butter, or both!
If you Google recipes for Oat Cakes you will get dozens of recipes for Oat Cakes. But I like this recipe because it is easy.
All the best, Cheers, June S.
Thank you so much. I will save it this time. Lol. These sound perfect. There are so many different recipes and some are thin and crunchy but I like ones like these that are thicker. I think I will make some today.
Hi Sarah: Thought I would send you the second recipe I found which is my back up recipe to the first one. I thought you might like it because it is named Nova Soctia Oakcakes.
2 cups Oatmeal, 1 cup flour, 1/2 tsp. salt, 1/2 cup vegetable oil or butter, 1/4 tsp. baking soda, 1/2 cup brown sugar, 1/4 cup boiling water.
Preheat the oven to 400 degrees. Line a baking sheet with parchment paper.
Dissolve baking soda in boiling water. (add a little more water if needed)
Combine dry ingredients with the butter, then add the dissolved baking soda.
Mold into a dough ball, then press onto a baking sheet. You can roll it out with a rolling pin to make it as thin as want. About 1/4" thick.
Cover and chill 10 mins. (I would skip this but it might make them bake crispier. I don't mind chewy.)
score down the middle and across to make 8 to 10 squares. Bake 12-15 mins. until they are golden brown. They should be crisp and crunchy, not chewy.
Note: Great with coffee or tea or to take on a hiking trip.
Cheers, June S.
My daughter made the oatcakes today and they are delicious. Just the way I like mine. I shared some with my neighbour who is always baking things and bringing them to me. She loves them too.
Hurray! I was wondering if someone could bake them for you. They are a great treat and not to sweet. Just good stuff. Happy they worked out.
Cheers, June S.
I go neautropenic after every cycle have to wait a week for bloods to recover then start again
Sorry for your delay Sarah.
That week will fly by you’ll see.
Hope you start to feel more energised in that time
Clare x
Thanks Clare. ❤️
I have a ct scan Monday but I find it doesn’t always comment on the bones that are seen by the scan. I’m hoping they will comment if there is actual improvement.
Tons in my spine plus it should see my ribs, breastbone, hips and pelvis. They just never comment on them for some reason. I get maybe “similar to previous scan”. I will be asking my oncologist to actually look at the scan so I know. I’m not due for a bone scan for a few months.