Gutted!: Just had Onc appointment and... - SHARE Metastatic ...

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Gutted!

Just had Onc appointment and she's stopped my Ibrance as neutrophils down to 0.7. I know it's common but I'm still sad. I've been doing so well with very few bad side effects and my lung mets shrunk by 18% after my first month. Also means I cant start Denosumad today as planned. I know I'll bounce back and it'll be ok but right now I could cry. I wont of course. I'll plaster a big fake smile on n pretend Im hunky dory!

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Josie

So sorry to hear and yes you will bounce back but I’m the meantime get that fake smile off your face and have a good cry, you deserve it! Suppressing emotions is a no no. Have at it!

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Ive been for a nice (if slow lol) walk with my dad, shake the doldrums off. Thanks to this group I know its quite common which is a comfort. Thanks. X

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Please don’t let it ruin your day. I went off it for a month because I was utterly exhausted. Take this time to do whatever you can to boost your immunity. Healthy food, supplements, meditation or prayer or both. Your doctor may readjust your dose. You’re doing well. And as Stage4Gir said, no fake smiles. We’ve earned our right not to have to be “up” all the time 💕

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Thanks. Yeah I'll keep eating my fruit n veges and having my juices. I asked Onc what else I could do and thete's literally nothing else. I think they'll end up lowering my dose because even though I feel ok, from the start of treatment my neutophils havent been above 1.2. Thanks to this group I know its quite a common theme so thats a small comfort. Thanks for the support. Xx

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How annoying but don’t obsess over it

I stopped for 5 weeks recently but because I was having radiotherapy

In the whole scheme of things it really doesn’t matter..,.before Ibrance came along women did really well for years just on letrazole or tamoxifen

It does make you worry though...I did as well having to stop...even though I knew I was being ridiculous

As the other ladies suggested...have a good cry or even better...treat yourself to something just for you

Barb xx

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Good point about before Ibrance, thats true. No Im not obsessing, just a bit deflated but because of this group I know it happens a lot so that does make it less scary. I feel a bit better now - been for a stroll with my dad.

Thanks for the support. X

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I've had my Ibrance stopped for a few days before now, but my neutrophils are only hovering at about the minimum (0.9/1.0/1.2, those sort of numbers). I am 5 months in and don't know why they don't just reduce the dose. I weigh a whisker over 9 stone so I would have thought 100mg would be better or even 75mg? I'm sure a little while off it won't matter overall. Why not take yourself off somewhere where you are alone and have a good old howl? You don't want to alarm friends and family but you need to let that sadness out...I've certainly done it before now and no doubt will again. Best wishes xxx

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Thanks LouisaMay. Oh Im surprised they havent done that with you. A lot of ladies on here have dropped their dose down. Mine havent gone above 1.2 since I started. Last time it was 1.2 and nurse said I have to be careful etc etc. Today the oncologist said there's nothing to worry about if its above 1!!! I didnt say anything but thats in direct conflict to what the nurse said. Ive read up on it and have some medical pals who told me anything below 1.5 is a worry.

Anyways, I'm over my little blip now. Its just at first isnt it. I know I'll be fine just didnt want to use up any options so early on. Hey ho. This is why its called 'fighting' cancer, got to keep strong and positive. Im back 😆.

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That's right! You are strong!

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Hi Josie,

(I finally figured out your name isn't Mindy!) I'm sorry to hear that you are feeling down. Wearing a fake smile might fool others around you, but is it making you feel better? Sometimes it's best to go ahead and have that cry and then put it behind you. I used to do that. I would cry it out, come to terms with whatever news I had been given and then move on. I didn't allow myself to wallow because I knew it would only make me feel worse. I hope you enjoyed the walk with your dad. I would just keep on doing whatever you can to improve your immunity and health until your oncologist tells you what is next.

Take care,

Sophie x

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Mindy and Sooty are my cats lol. yeah that's it, keep on with fruit n veg - and juices 😆. I love walking. Have to go a bit slower these days but thats ok, I wasnt in a rush. Im over it now. Its just when they first say it, your heart sinks. Also, I was hoping to get back to work soon. I know thats top top of the list but its important to me to get back to some kind of normality. I love my job and now Im more rested - been off two months - Im ready to go back. I maybe still can because I dont feel too bad in myself. Ive had a DSE assessment and theyre giving me my own little room and more flex working so I can work from home if I need to. All very positive support.

Fingets crossed my count will be back up next week but if not so be it. Thanks x

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Ah, OK! I will have to remember that. You should post a picture of Mindy and Sooty! My cat, Jack, is a Russian Blue and as far as I'm concerned he's the handsomest cat around! Can you tell I'm biased?

I know what you mean about wanting to have a normal life and getting back to work. I didn't take any time off when I was diagnosed, but I am self-employed, so I can be quite flexible when I need to be for appointments, treatments and so on. That's great that you can work flexibly, including from home. That makes all the difference. I feel normal being able to work and carry on much the same as I did before my diagnosis. x

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Aw I saw a grey/blue cat at the vets last week. I was telling my hubby it was the most beautiful looking cat Ive ever seen. Think it had some maine coon init cos it was really fluffy.

We lost Mindy a few months ago bless her. But she was very old and frail with kidney problems so we had to be kind and let her go. We were heartbroken. She was a lovely tri colour.

Sooty is a stray my hubby tamed. We've had him around 7 years now. He's a tatty raggy lad with massive paws lol. He's got more toes than he should have - a condition called polyactyl cat . He's a right little tinker always nibbling my feet lol. He's my hubby's baby and follows him round the garden like a dog 😆.

I worked when I was first diagnosed, it was the best thing for me but I did become quite unwell and decided I needed a little time to get used to everything. It was the right thing to do and I feel - and look - so much better for it. I feel in myself Im ready to get back now so this is why Im a bit frustrated. But its just a little set back like many others on here have had so Ill be fine. Bet its great working for yourself, all the flexibility you need. My employers have been amazing though with all that. Xx

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I'm sorry to hear about Mindy. That's the worst thing about pet ownership. That's why my husband and I have said we won't be getting any more cats after Jack dies.

I hope you are able to transition back into work with no problems. I love being self-employed. I wouldn't want to work for anyone else again. x

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I understand how you feel about not getting more cats. I am on my last of 15.She has kidney disease but is holding her own at 13. I have survived cancer 3 x and know I cannot get another kittie. But I may foster kittens and see them off to a new home!

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I would definitely recommend fostering cats. I did that for over two years. It was very rewarding.

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I am off my Ibrance for 3 weeks each cycle as my neutrophils always drop to 0.5 and takes the 3 weeks to get back to safe levels. I have also been off it for 2 months to have hip replacement surgery. My Mets have stayed the same and have it worsen although they haven’t improved either. Try not to sweat a week or so off which I know is hard to do.

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Thanks Sarcie.crikey yours go very low then. Ive got over it a bit now. Its just at first isnt it. Good luck with the hip surgery/recovery. Xx

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Thanks. Almost back to normal but my hip was so bad from my Mets it will never be 100%.

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Ah really. 💕 xx

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I wish you a speedy recovery.

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So sorry Josie but as you have read unfortunately it is common....these are tough drugs but they need to be to fight this beast. Ibrance has such a long half-life and as such it stays in your system long after you took your last dose and as such continues to do it's magic on the cancer buggies.

No plastering on that fake smile.....go have yourself a wee cry and you will feel better. How you feel is far more important than how you look to others. I see you had a nice walk with hubby....that's wonderful and remember slow and steady wins the race too. Onward you go and we will be here for you. Take care.

Sandra

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Thanks Sandra. Yeah youre right, its still in there zapping isnt it.

Talking of which, i wanted to ask something. Now this may be a stupid question but I have 3 areas of mets on my spine at L1, T5 and T9. Ive had pain for a while in L1 but before Ibrance none in the others. Ive recently started getting twinges and wondered if this could be the Ibrance/healing ? You know like when you get a cut and it starts to heal, it itches n twinges. Im probably completely wrong lol but it just crossed my mind it could be that. Have you - or anyone else - heard of that?

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It quite likely is the Ibrance working on the cells there. I have mets everywhere in my spine and I did also feel the same twinges and vague feelings and as time went on my scans showed healing in the mets. Once you can get started on the bone strengthener it will help too. I get Zometa infusions every 3 months.

Sandra

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Ah thats really interesting. I bet thats it then. Well that also makes me feel better. Cheers x

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Hi Josie

I have extensive bone mets and much pain in T5 area as it fractured and that’s how I found out about the mbc

I’m now experiencing pain in my lumbar region and I was panicking as I assumed it’s bad news and mets are progressing though my last scan was stable

I’ve never heard that healing mets can cause pain...very interesting...hope that’s the case with me

Barb xx

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I hope so for you too. It was just as I thinking same as you and worrying it was progressing and it just occurred to me that it could be the healing I was feeling. Next scan is September so it'll be interesting to see.

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I had pain, but wasn’t sure if it was from the mets in my pleura or T9 and T12. My pain was hugely improved over the last 3 weeks. I noticed a difference after my first Denosumab injection, so put it down to that. Hope you get to have yours soon.

My pain has increased this week - but I have really overdone things, both at work, at home, and on Bella. So it’s my own silly fault. But it was nice trying to do everything I did pre-April 1st!!!

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Better give yourself and Bella some R&R time over the weekend. It's great that you're managing to be so active but it is easy to overdo it. I cant really complain about pain yet. The L1 pain was bad a while ago, referring to my hip and down my leg causing sciatica type pain, but acupuncture has really helped with that. On a scale of 1-10 now its around 1-2 so it more of a discomfort. Likewise the T5 and T9 very minmal. Still want to start Denosumab soon as though because you never know when the pain might kick in and anything that helps n all that.

Have a lovely - relaxing - weekend. X

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So glad pain isn’t an issue for you. You have enough to deal with the shortness of breath.

Bella is not allowed out of the shed until tomorrow!!!

Have a good weekend 🙂x

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So much good advice here already! Just want to add that pain from my bone mets (and I have lots of them) got much better after I started Denosumab. I've been doing it every other month for about a year and a half, now I'm going to go to every three months. No bone pain for now.

I also started on 125mg Ibrance then switched to 100mg after my neutrophils were .5. I've read several studies that say the lower doses, even down to 75 mg, seem to work just as well. Maybe that will be an option for you down the road.

Finally I'll share this supposedly Chinese proverb that I came across earlier this week....

“That the birds of worry and care fly over your head,

this you cannot change,

but that they build nests in your hair,

this you can prevent.”

I love the image of shaking those darn birds out of my hair before they can make a permanent home!

Enjoy those juices!

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haha loving the proverb :).

I think I may end up on a lower dose because from day 1 my neutrophils have been low, never been above 1.2. Saying that, compared to your 0.5 that's not so bad. Can I just ask, were you given any advice and did you just carry on as normal when they were so low just taking extra hygene care etc. I'm thinking about returning to work as soon as I can and wasn't sure of the wisdom of it while the count is below 1.

Thanks for your support. x

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I canceled a plane trip and minimized contact with grandkids while my neutrophils were that low. However my oncologist said that, even though it makes neutrophils drop, Ibrance didn't affect the "barrier" immune system (mucous membranes in nose, mouth, throat, etc) that protect against illness. So unlike some chemos that wipe out all protection, she really didn't see as many infections or fevers on Ibrance, even with low neutrophils. I erred on the side of caution though. I think a lot depends upon what else is going on in our bodies, how we are eating, other supplements, etc. She did recommend lots of hand washing and wipes.

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Ah thankyou, thats very helpful. Im getting my own room and flex working so I can work from home sometimes so I think I'll be fine.

Brill, thats given me a boost. Thanks again x

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Just a thought, your employer sounds as they they are making excellent adjustments, but as you've been off for a couple of months, are you having a phased return?

I found that really helpful when I went back to work after my treatment for the primary breast cancer. I felt absolutely fine at home and was desperate to get back to work, but found the new routine quite tiring and was pleased I didn't go straight back in full time. My employer allowed me to work reduced hours without affecting my pay.

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Hi Julie, yes Im phasing back in. Just doing a few hours in the mornings for first week then see how I go. Increase it gradually. Theyre happy to be flexible around my working pattern too. So for example my core hours are 8-4 but I usually get tired around 3. If I need to I can break at 3, have a snooze and make up my time after 4. That will be so helpful. Ill probably go home at 3, have a granny nap and maybe work from home 4-5. Im really lucky I can do that.

Cheers xx

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Brilliant! 😊 Having an employer will to make adjustments makes such a big difference and of course it benefits them in the long term to.

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I was down to 0.6 on Monday-after 5 cycles my markers keep going up-667. Not sure what’s next had CT today to check for progression- don’t think Ibrance is for me. Very disappointing since I really felt good on it.

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Hi MMMP, they don't monitor markers where I go - I asked about it and my Onc told me they hadn't used them for the last 10 years! I wasn't too concerned because I'd read on here that sometimes the markers aren't so accurate. That's the frustrating part isn't it, when you're feeling fine but the count is so low. Saying that, overnight last night, I've not been so good, been up with a dicky tummy. Could be the antibiotics the Onc put on though as I've not had this previously.

When do you get your scan results? Hope you don't have to wait too long. Fingers crossed for no progression/shrinkage. If you're on the highest dose it may just be that you need a lower dose like some of the ladies on here have suggested. I've also read on here that sometimes the medical team will change up the pattern - one lady I read did 2 weeks on/2 weeks off and there are some other variations. It is disappointing - I didn't want to use up any options so early on but I guess we have to look on the positive side which is at least there are options - much more than there were only a few years ago.

Fingers crossed for both of us that we get sorted soon.

take care. xxx

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My onco also said tumors markers mean nothing and are not used. They tend to fluctuate and it doesn't mean anything.

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Thanks for the encouragement-see MD on Monday!!

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May the force be with you on Monday

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Hope you get good results.

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Sorry to hear that. How long were you on the Ibrance? I also saw that response to my lung met.

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Hi AmosF, pleased to hear you had a good response too with the lung mets. It's a great feeling knowing it's working isn't it. That's why it upset me having to stop - even just for a short while. We just want to zap it away don't we. I've only had 2 rounds and was about to start the 3rd cycle. Never mind, with the support on here and all the advice, I'm over it. Lots of ladies it seems have had similar circumstances and are still doing fine so that gives me so much encouragement. Even if my dose has to be lowered I realise it's not the end of the world and might even be better as I may not be as tired. Feeling much more positive today. Thanks for your response. xx

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Oh no. I am gutted for you.

I feel we are similar, and travelling this road together.

I wish I could give you some of my neutrophils.

This will be temporary - a hiccup - a bump in the road.

Take care of yourself, and be kind to yourself.

My Specialist nurse said your blood count can bump up very quickly.

🤞

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Ah bless you for that, that's so sweet. Yes I feel like we're following a very similar path with the timing etc. I'm over it now, it's just when they first tell you, your heart sinks, particularly because I've not been too bad on it AND more so because of the lung mets shrinkage. With all the advice on here though, I realise it's not uncommon to have to take a little break which makes me feel so much better. Today's a new day, onwards and upwards. I've nothing planned for today and it's raining - boo! - but I'm going to take advantage put my feet up and settle down with my Peter James book :). I'm having afternoon tea with one of my besties tomorrow so that's something nice to look forward to too.

You have a great day. Speak soon. xx

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I’ve just read an article saying 90% dark chocolate can increase your neutrophils!!!!!Hoorah

By the way my name is Clare. My bike is Bella 🤪

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That’s cheered me up re dark chocolate...I always have some 85% after my evening meal

Barb xx

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Me too 🤭

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Hi Barb.....How are you feeling these days post radiation therapy?

Sandra

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Well it’s two weeks today since I finished...I was a bit cocky straight after and assumed I’d be ok but this last week has been rubbish...feel so weak and a bit nauseous...however wearing sea bands and having ginger sorted that out

I was told that side effects peak at two weeks then should subside

Hope so as going away next week for five days to Southwold...last minute decision so hope I perk up!!

So kind of you to ask

Thank you

Barb xx

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Sounds like perhaps you are going to be on the upswing now so that will be good and something to look forward to in a wee trip is always motivation. Any special plans in Southwold or just for the heck of it trip?

Sandra

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Well I saw the weather forcast good next week and fancied going to the coast...I really miss the sea as I was brought up on the coast...living in Nottingham can’t be further from it

Barb xx

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Sounds perfect! Please share a picture with us while you are there. I grew up in Newfoundland on the Atlantic ocean so I am very far from the ocean for sure. Thanks.

Sandra

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Gosh Barb, you are going through it at the moment. Really hope those nasty symptoms go and you have a great trip.

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Aww thank you

I’m fairly tough normally but the feeling so weak was quite scary..felt like my legs would buckle ugh

Barb xx

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Yay

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I also tell myself that gin is good for my blood count ......... works for me 🍹

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Lol! That works!

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Just bought myself a new bottle!!!

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Cheers

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I’m going on a gin tasting evening soon...been before...good fun with my chums

Barb xx

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Claire my neutrophils are good but I still like the sounds of this. I love dark chocolate and I also tell myself that it needs proper enhancement with a glass of red wine. That's my story and I'm sticking to it.

Sandra

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Mines a nice white pino or chardonnay 😃

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Ooh I do like a Pinot - but am finding white acidic nowadays. I’m sure I could manage one with you one day Josie x

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Sandra I am with you. I can’t seem to manage as well on white, so have converted to red recently. I don’t know if it’s the meds, bit I get a bit sozzled on 2 glasses. My favourite tipple used to be Jack Daniels - but I think that really would be the death of me!!

In fact my favourite now is chocolate with a glass of milk when I take my meds. I’m probably not meant to have dairy either!!! Bugger 😬

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😃 x

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It is so hard to halt treatment even for only a little while without feeling disheartened/ worries/ cross or a combination of all 3! As you said it is not uncommon but it doesn't make it any easier. I am also an avid user of Positive / glass half empty rhetoric but ,you know what, I have started to visit the dark side from time to time with a good old cry burst when the glass is just simply overflowing with emotion and it totally lets the steam out! Instead of getting me more depressed I get a feeling that I simply let some steam out of my system! I know we are not meant to admit to it , we are meant to be those strong positive warriors ( because ,as everyone keeps on telling us, our mental state is part of the treatment right!)....But I do, I have finally come to the " this is not f. Fair " stage , not to feel sorry for myself but just to admit that what we are dealing with is all mighty testing! And it helps set things in context.It doesn't stop me from staying positive and hopeful but it acknowledges that every setback chips at our resilience ( well at least temporarily) and that we are not wonder woman ( also we all seem a pretty good bunch of decent Amazons! )... Now I have not yet made it to the stage where I show my Achilles' heals to friends or family ( I reserve my crying to empty rooms or ones with health professionals in) but that works for me... Friends and family have their own burden to bare...So in a nutshell and apologies for rambling on: it feels crap, have a good cry and let's cross fingers you get back on it soon...It still works so it is all about your body adapting... I am wishing you the best of luck for the next few weeks... Ibrance is for me still like an old boyfriend who left me when I was still very much in love and planning many years of happy relationship 😉... And I am still grieving 1 month on ( still too early to tell if the rebound boyfriend - Afinitor- will be a decent long term partner!)... However whilst I can talk about the pain of a treatment stopping working I can totally see how having to stop a treatment that still works but that you have to temporarily stop because your body is just too affected is taking the challenge to a whole different level .. You have it tough, just admit it to yourself and then fight back whichever way best works for you ! Until the next test! Sending you love and those almighty good vibes everyone tells us we need to carry with us at all time!

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Hi Marie,

What a great insightful response - not rambling at all. Thankyou so much. I love the boyfriend analogy, it made me chuckle out loud to myself. You're so right about having a good cry to let off steam. I've been a bit emotional over the past week or so - probably caused by the Letrozole. Like you, I tend to cry to myself and keep a "strong" front to everyone else but I slipped and cried in front of my husband the other day. I then felt worse afterwards because I felt bad that I'd upset him, which I know I shouldn't but you can't help how you feel can you. BUT, I felt better about the reason I was crying - if that makes sense. I was having the panicky feelings - you know the ones where it suddenly hits you when you let your guard down from all the "strength and positivity" when you realise the gravity of it all - just like you're saying in your response.

I'm sure you're right about my body adapting because Ibrance is a very strong medication so really it's naive of me to think I'm going to sail through it. There are going to be blips along the way - I guess it's part of the journey coming to terms with that. I'm back to see the Onc next week so fingers crossed my count is back up but if not, the good thing is there are options - many more than there were a few years ago - so we can take comfort in that.

I do hope your new "relationship" works out and you live a long and happy life together :).

Take care and thanks again for your invaluable support.

xxx

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I wouldn't worry about crying in front of your husband... I have come to the conclusion that loved ones takes some comfort in us stopping to pretend all is well from time to time. I know my husband would rather I showed the occasional weakness so he can either a) be the alpha male, comforting and loving or b) share the all mighty "crapness" of those cards we have been dealt and feel sorry for ourselves together... It doesn't work for me so because it adds a complexity layer of " ok so which emoticon Marie are you today ? " in our relationship that I don't want ( I keep that for my Afinitor boyfriend!😂😂)...

Make sure to keep us posted on your journey ( with full updates on your daughter's pregnancy thrown in! We like things to look forward to!).

Look we are unlikely to get a letter from the Queen celebrating our 100th birthday but whatever we have we will make Dawn sure we treat with that added respect this horrible disease have reminded us of...Life is precious , we have people to celebrate it with ... Let's do this for as long as we can and take each setback in whichever way we feel is right at the time! The cancer might adapt but so can we!

Take care

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ah how nice of you to remember about my daughter's pregnancy. She's seeing the midwife for the first time this morning. She asked me if it was ok if she took her fiance instead of me, bless her. I said well, maybe we should let him have some involvement seeing as he is the dad!! hahahaha. I'm awaiting a full report though lol. Life certainly is precious and I intend to make the most of every minute - that's the main lesson I'm taking from this enforced journey. Life is way too short to hold back and yes, we can and will adapt to whatever it throws at us.

You have a great day whatever you're up to.

Take care.

PS Good luck next week with the COC appointment. Keep us all posted. This is definitely something up my sleeve in due course.

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Those panicky feelings are overwhelming. When it happens to me it comes out of nowhere!

And yes. You do realize the gravity of it all!

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oh yes, you did say at the outset your bike's called Bella. hahaha, senior moment lol. Can't remember without trawling through the messages whether you know I'm Josie not Mindy :). Mindy and Sooty are my cats names.

Well, I'm back to see the Onc next week so I'd better stock up on Bournville choccy - always a silver lining.

Thanks Clare :) xx

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Don’t worry I hadn’t told you my name before. All part of that ‘keeping things close to our chest’ that we do. I haven’t told many people (family and friends) the extent of my cancer, because I don’t want to put that sadness on them. Anyway I digress. Wishing you lots of luck for next week. Get eating that choccy.

By the way, I think your daughter is very wise taking her fiancé to the appointment with her - the sooner he knows what he is in for, the better!!

Sending you virtual neutrophils 😝 Clare xx

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Hi , I had to stop twice for a week , because of very low neutrophils. One point my neutrophils dropped Down to 0.2 ... Just stay positive , it will come up in a few days time, your body needs to adjust to ur treatment xxx

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0.2. Wow, that's the lowest I've heard of. With all the advice on here, I'm fine now. Feeling much better about it all today. Think it's naive to think I was going to sail through without any hiccups, after all the meds are super strong as they need to be so you're right, our bodies need time to adjust. We're not super human are we - well, just don't tell my husband and kids that lol. Thanks for your support. xx

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I had very difficult start , ended up in hospital twice ( low neutrophils) , had horrible ( still have ) headaches, but I can manage it now with proper migraine medication, was feeling dizzy all the time , now I am running 3 times a weeks and doing yoga twice a week. So don’t worry :) xxx

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oh that's great to hear that you're managing to do the running and yoga. What a relief for you after such a horrid start. Exercise is really important isn't it. Unfortunately, part of my mets is in my chest cavity and I get extremely breathless so I'm a bit restricted. I am working on it though, I won't give up. Currently researching e-bikes following some good reports on here :) xx

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E-bike posse.

Meta-tastic e-bikers!!!! 😮

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Love it 😃👏👏👏 x

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Hey Mindysooty,

On my 8th cycle of Ibrance 125mg my neuts dropped below 1 (like you I was pretty peed off having to stop it). However, my bloods were taken a couple of days later and they had jumped up to 1.6 so restarted the Ibrance there and then, no harm done.

The best thing about the Ibrance is that the neuts recover really quickly.

My Oncologist wasn’t worried in the slightest when they dropped, and said with a reassuring smile on his face, that he was pretty confident they’d recover in a day or two. He was spot on (as always).

xxx

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Hi Moon and Stars, yeah fingers crossed eh. Since I started mine haven't been above 1.2 but as long as it's over 1 that'll do enough. I'm back next Thursday so fingers crossed. Thanks. xx

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Mine are always under the 1.2 too, so I’m in good company 😀

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Same with mine

Barb XX

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Hi

I've had this problem on many occasions and have had to take lots of extra week breaks to get my neutrophils back up. My onc did actually mention taking me off it altogether which I will get a second opinion on if that conversation comes up again, because as long as you are not showing progression you should be able to stay on drug, even if that means having extra weeks off. I'm down to 75mgs now and have still had low neutrophils on occasions?!

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It's very reassuring to know that lots of you on here have had the same issue and got the neutrophils back up. Yeah, I'd be same, having listened to everyone on here, I'd be willing to reduce the dose but giving it up altogether would be a wrench - so early on for me anyway. I realise that down the line somewhere that's likely to happen. Just not yet eh. Thanks. xx

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So sorry . But you will recover. But ya know it's ok to cry and move on!

Sending hugs.

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Thanks Marianne, I'm over it now. Thanks to all the support on here I realise it is very common, not the end of the world and if in the long run I have to reduce the dose, so be it. Thanks for the hugs :). xx

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Hi ! don't let it get you down. I had to drop my dosage from 125 to 100 after only one month my numbers dropped so low. But since then I have now been on Ibrance for 40 rounds with stable results. I have only had to postpone starting up the cycle about 5 times due to low numbers but then did well again. Hang in there. I've been metastatic since 2016 -- after first being diagnosed in 1996 and then major progression in 2009. You can do this.

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40 rounds - wow. Youre an inspiration to us all. Yeah Im fine now. It is obviously very common to stop and/or reduce the dose. I love this group because theres always someone to advise who's gone through whatever it is youre coping with. Thanks for your support. X

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My onco stopped me after three cycles bc of white blood cell count, but I felt sick as a dog on my week off. I could do nothing. There are other meds. I am now on Verzenio. You take this twice a day with no breaks (which I was happy for bc I started getting depressed on cycle two of Ibrance knowing how sick I would feel). My onco started me with 150 mgs. twice per day. I could not handle it and stopped taking it after two weeks. She then lowered it to 100 mgs. twice per day and again I could not handle it. She then gave me the lowest dose which is 50 mg. and what a difference. Unfortunately, this is my first full month and usually the pharmacy calls me for the week before and they deliver it from the cancer center. I called early and used the automated system and it said I was not eligible for a refill for 17 days. I assumed they make a mistake and went back and looked (Verzenio comes in this box and I find hard to figure out how to open so I rip it open and just take out the piece with the pills. Like the other doses, it has four different boxes (one for each week) and then has Day one, Day two, etc. with a pill on the bottom and top of each Day. I assumed bc my onco did not say anything to me that I was to take it twice per day like all the others. I then see in tiny little print that I was rxed with taking ONE pill per day, not two. So now, I am short but I see my onco on Monday. So far been good with the Verzenio. So do not worry. I much prefer the Verzenio over the Ibrance. But I needed the lowest dose. The high dosages were too much. So don't worry, I could not stay on the Ibrance either but I was glad to get off it. I don't have the fatigue I used to get now on the lowest dose of Verzenio. Different drugs work better for some than others.

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Oh no, not good taking the wrong dose. Im glad its working for you now. Im over it now reading all the advice on here. Like you say different things work for different people. Thanks

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Josie

It will be ok but in the meantime cry, rant n rave all you need. No need for happy face not felt.

We are all here for you.♥️♥️♥️♥️

Frances

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Ah thanks Frances. I love this group cos everything you need to know, someone always has good advice. Im fine now and realise its very common. Thanks so much for your support. X

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Don’t be sad! We’ve all been there multiple times. I took many breaks 2 to 3 weeks even off vibrance before I started again. It makes me feel better when I know my bone marrow is building back up as opposed to continually being completely destroyed. So look at it is a good sign that it gives you a chance for your bone marrow to start producing the white cells again

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Ah thankyou. Yeah thats a good way to see it. Im fine now. Just a tiny blip. Everyone on here helps so much. Thanks for the support x

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This cnacer is a bitch emotionaly. It is difficult, at best, to keep it in check!1

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I am sure you will bounce back too but cry!! Let it get out of your system. It really isn't good to keep it locked up and sheesh we have every reason to cry once in awhile!! We got your back!!!

Kim

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Ah thankyou so much Kim. Im all good again. This group's amazing. All the advice and support is invaluable. 💕 x

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It is what we do, yes? Smile when our hearts are breaking? I KNOW that everyone says to just be yourself, but, like most cancer patients, I feel this pressure to at least pretend that I am ok, especially around friends and family. I find that if I show weakness, they panic....so I always try to appear strong....and then cry in the shower or something. So, you are NOT alone. I was on Ibrance for 5 months and it was like a miracle drug for me. I had minimal side effects and my cancer markers went from 96 to 56. And then it just stopped working. My cancer markers went up. I had scans. I had a new growth on my sternum and 6 more on my liver. I was taken off of Ibrance. I was devastated. I attend a support group and several women in my group have successfully been on Ibrance for years. I am now on Afinitor and it has multiple bad side effects. Keep hoping. Keep trying. If you feel (as I often do) that you can't fall apart around family.....then let it go in here. You are in safe hands here. Many have stood in your shoes. And maybe with some rest....your counts will go back up and you can get back on Ibrance. Just know that you aren't alone. This group saves me over and over again.

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Ah sorry it stopped working for you but at least we have options and different treatments. Yeah fingers crossed for next week. Thanks for your support. Xx

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Hope after a short break your counts will be back up , so try and get some rest but keep you mind occupied ! x

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Me too. Onwards n upwards x

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