Neutrophils update.

[Beryl71]

A couple of weeks ago I mentioned my low neutrophils. What I didn't go into at the time was how wretched I'd been feeling because quite frankly I didn't realise how all of this was connected. I'm pleased to say my neutrophils were up to 2.1 so I've now restarted my ibrance. However it has knocked my confidence and I'm now worried it's going to go down again during the next cycle, as it's only just into normal readings.

After my oncologist appt I looked into all of this, and discovered this paper explaining the neutrophil issue.

cancer.net/coping-with-canc...

I realised I had had pretty well all of the symptoms mentioned. At a GP check up on Friday I was told that .9 was spectacularly low, also that the blood reports don't go to the gp. , So the penny hadn't dropped about my symptoms and after four telecalls with four different doctors and their various suggestions and prescriptions, I only got better when I was resting from ibrance for two weeks.

Now I don't know whether to call the oncologist, the emergency dept as it says on my palbociclib emergency card or my GP, if I get symptoms in future.

I'm beginning to feel my life is sliding out of my control and with this uncertainty I'm cautious of arranging anything more than a couple of weeks ahead. This is disappointing as I spent a lovely week when my new partner came to visit and desperately want to visit him in the Outer Hebrides. Do I dare be away from my local medical support network.....

Just needed to share, as it's all going round in my head! Thanks. Carolynx

[Rotagirl]

Hi Carolyn, like you my neutrophils go right down, below .8 I think. I am not allowed new palbo until they are 1.0 or above. That usually takes 11 days. I am on 100mg perhaps they will put me on the lowest dose of 75mg. I have been on palbociclib and letrozole from diagnosis 3 years ago. Don't put off fun things. As long as you have your medication with you you should be ok. My husband and I are in Shropshire and we had a couple of days in Wales. Lovely to get away. Take care Fay

[Beryl71 in reply to Rotagirl]

Do you get all the horrible symptoms. I could hardly sit down I was so sore and uncomfortable. I'm on 125 mg and have been for about 14 cycles. I had to wait two weeks to restart. It's having all those symptoms, fever and fatigue if I'm away from home that worries me.

[Rotagirl in reply to Beryl71]

Hi Beryl, my worst time in the palbo cycle is during the 11 days off when I sometimes feel sick and my brain goes to mush, not at all pleasant. I suppose it is my body trying to get the neutrophils up again. I tend to let my self have a short nap during the day. It seems to help. I am 80 so I feel justified in slowing down sometimes. All a big pain isn't it? All the best, Fay

[Beryl71 in reply to Rotagirl]

I think I'll be more alert to the pattern in future. X

[Hidden]

Thank you for sharing this article. I will be more careful now that I read it.

I am fully covid vaccinated. I still wear a mask in large public settings. I haven't had a cold since before our lockdown in Massachusetts in March 2020. It is no coincidence.

This article reminds me that extra care is necessary going forward. Thank you.

[viennagirl]

Someone said to me one time that "life is a bold adventure or nothing at all" I don't know where he got that quote from but it does seem to have a message to all of us. I think it means not to let fear dominate us. I hope you encourage your lovely friend to visit you. Be brave Beryl and I am sure it will all work out. I am glad that you discovered that you needed to rest. My onc won't let me have my Ibrance and Letrozole when my neutrophils drop belown 100. Most of the time they are just slightly over that or just right one the nose. You should take time to rest. I frequently take a nap in the afternoon and that seems to restore me. Hugs Marlene

[Beryl71 in reply to viennagirl]

I agree and that's the line I've taken but feeling so unwell really knocked my confidence. Carolynx

[Corgi3]

I can SO relate to your feeling of life spinning out of control & not being able to plan very far in advance. I wish I had answers for both of us. I have been trying to take it a day at a time. I encourage you to go visit your new partner. Maybe at a time when you're neutrophils are @ their highest....I do think it's important to have things to look forward to & also be flexible if you don't feel well, reschedule for another day. Hopefully, people understand you're not being fickle, but that you never know from day to day how you're going to feel. Sending lots of love & positive thoughts from Iowa!

❤ Bev

[Beryl71 in reply to Corgi3]

Thank you, fortunately my new partner is a brave man. I told him about my disease when we first met and he just said none of us know what the future holds. As he has learnt more he says he's not worried if my hair falls out or a physical relationship becomes impossible, because it's me as a whole person that he cares for. Aren't I lucky. But I don't want to let him down, or be a burden because I've always been independent and self reliant and realise now I'm going to need to lean on others sometimes. This has just been another stage in learning how to manage the disease and live my life as fully as possible. Thank you for your supportive words. Carolyn x

[Corgi3 in reply to Beryl71]

Sounds like a great guy! All the best in this journey we are both on. My husband of 30 years is having a lot of trouble handling this....I developed metastasic plural effusion a month ago & he googled and saw some statistics from 2019 that said I only have 3-12 months. I said that is not current data, they don't know my specific case & to not Google, please. He hasn't been himself since. He's in the anger stage & like you, I am very independent & am trying to remain glass half full. I'm currently on my 3rd line of treatment in 12 months, a Clinical Trial & only on Day 17. We haven't given it enough time to know if it's working. I need to give it 2 months & have a scan. If there's progression it's on to IV chemo and possibly immunotherapy. I hope & pray he can stop yelling at every little thing that sets him off. He's normally very laid back. I was upset for about a day, as we learned on June 8th (our 30th Anniversary) that the fluid from the plural effusion was cancerous. I quickly found acceptance & a strange sense of calm. I guess one of us needs to be calm.... Hoping you and I have years of quality life & ever hopeful for new improved treatments coming along the pike.

Take Care!

Bev

[Beryl71 in reply to Corgi3]

You take care and good luck with your treatment. Somehow try to persuade him that every day is important. He'll be even more angry later if he finds he's wasted your precious time together.x

[8576]

Hi Carolyn: Just wanted to add, that in a week or two or maybe less you will feel better. When there are changes it is difficult to process. And dealing with Cancer is a roller coaster but most of us learn to cope. Take advantage of all the programs at your Cancer centre even if you don't think you need them. There are tidbits of info that will help.

Cheers, June S.

[Southside25]

I'm on 75 Ibrance and instead of the standard 21/7 schedule, I'm on a 5/2 schedule. You might try that. Taking it 5 days then off 2 gives you a better chance of keeping your neutrophils up. Mine are low but well within the standard range. I've been on the 5/2 schedule for about 2 years and have been doing fine.

[Beryl71 in reply to Southside25]

That's interesting. No doubt they'll suggest that if I get a repeat of this. I'm still on 125mg. Thank you. X

[Totheriver]

I am on the 5/2 schedule also and am lucky if my neutraphills get to 1. Constant struggle..

[Southside25 in reply to Totheriver]

Maybe because I'm on 75mg which I've been on for about 2 years. From what I've read, if it works for you, it works regardless of dose. I had a problem with thrush on 125, went to 100 and then 75.

[Totheriver in reply to Southside25]

I started on 125 but got very sick and was hospitalized. Then strugggled through a couple more months. No quality of life. Then dropped to 75 and still almost always needed 2 weeks off. Then went to 5/2 and am just making it but don’t always feel well. I have been on this since May 2019. It is a tough journey.

[RLN-overcomer]

Hang in there sister/warrior. I pray GOD will shine his light on you, and your loved ones. I know it is easier said than done, but have a good therapeutic cry, and then fight for your life, and the joy you deserve. 🙏😇