Four and a half months post chemo and neutropenia causes a little trip to hospital- why?

[Bethan49]

HI there!

Having finished chem at the end of November , I have felt that things are getting back to some sort of normality. I have been feeling well, gone back to work as a teacher on a phased return and have enjoyed NOT going to the hospital!

This Easter, I came down with a tickly throat and the beginnings of a head cold. Having not contracted any infections throughout chemo, I decided I would visit my GP to just check everything out.. she agreed that I had a red throat but was very reassuring and prescribed amoxicillin.I had also spiked a temp of 38.5 but took paracetamol which brought it down. Being thorough, she also decided to do my bloods. Five hours later, whilst having a bit of a browse around the shops, I had a call from the doctors telling me I needed to go straight to hospital as my neutrophil count was 0.3 and lymphocytes at o.4 .

So, I am then admitted and given IV antibiotics and monitored for 36 hours... in a side room ... but very bored and frustrated. Whilst I felt I had a head cold, I did not feel ill. No one could tell me why my immune system is taking so long to recover... I asked ...

I was released 36 hrs later.. neuts had gone up to 1.0.

Can any one tell me if this is common after chemo? What do I do now? Do I go to work? Do I just go back to being extra vigilant with hygiene etc? Will my immune system recover properly? This experience has made me nervous. 😬

I have a consultants appointment in May so thinking I will just ask for answers then!

[MF79]

I finished treatment July. My levels haven't dropped that low, my hb dropped at my last visit. It was a bit worrying looking at the screen and seeing a lot of red in my blood results. The consultant said it can take up to 18 months for the bone marrow to recover and to return to normal levels of production following FCR. Oh joy!

I'm generally exhausted at the moment, was thinking if I don't pick up I'll head to my GP. I wasn't given any advice about avoiding situations. Let me know what advice you are given.

Hope you are feeling better and get back to "normal" soon.

[Bethan49 in reply to MF79]

I will do ... its just a nerve racking pkace to be again .. x

[Justasheet1]

Bethan,

It took me almost a year to recover fully. I had BR. Stay EXTRA vigilant forever and you will be fine. You definitely did the right thing.

Jeff

[Bethan49 in reply to Justasheet1]

Thanks Jeff... its reassuring to hear other people's experiences x

[Newdawn Administrator]

Oh I'm sorry to hear this Bethan because all was progressing well but thank goodness your GP checked things out. Poor you in a hospital side room. Whilst necessary, it's a very boring and isolating experience.

Take care and hope the neuts start rising soon.

Newdawn

[Bethan49 in reply to Newdawn]

It's just frustrating! However .. onwards and upwards! How are you doing?

[wroxham-gb]

I agree with Jeff, it pays to be very vigilant but in a managed way. Not to let it take over your life and control it. Apparently Retuximab can carry on working 6 to 12 months in our bodies

After treatment has finished.

Hope you are soon feeling a lot better and normal Bethan.

Take care and best wishes.

Sue

[Bethan49 in reply to wroxham-gb]

Aw Sue thanks for that! It was abd felt a bit of a drama... managed a bit of attention !!! Just made me a little nervous ... what you can't monitor your blood yourself and you have no idea what's going on !

Hope you are doing ok Sue x hugs x

[wroxham-gb in reply to Bethan49]

I'm doing ok thanks. When's the next

Hooley!

[Peggy4]

That's such a shame and I can imagine the shock. Quite a dilemma and I can understand that it's knocked your confidence. Hope things pick up soon.

Peggy

[Cllcanada Top Poster CURE Hero]

It is called..LON...Late Onset Neutropenia... a 'feature' of CD20 monoclonal antibodies sometimes...

Its an emerging common adverse event... 🙄 Very upsetting, you need to be particularly careful of food anf kitchen hygene.. there are many diets on the internet as well, but generally stay away from fast food, deli foods, restaurants and unpasterized everything... soft cheeses, raw honey... they are lists ... avoid probiotics... thankfully its only temporary, your neutrophil counts will return, but may need help...

More here

medscape.com/viewarticle/75...

Neutropenic diet

upmc.com/patients-visitors/...

[Bethan49 in reply to Cllcanada]

Thank you so much for this.

I have scanned and gleaneda little bit ..picking up on the positives but please put me right if I'm wrong .

Be vigilant ...Obviously.

Lon can be taken as a positive as it shows that that the treatment (especially ritux) has had a good impact on the bone marrow.

However I am totally aware of the negatives of neutropenia and the need to access help if it occurs.

Thank you for your help x

[ap64]

Bethan sorry your system is in a bit of a spin. Hoepfully time vigilance and a couple of prayers from me will help. Ir was such fun seeing u and your two partners in crime in the picture you guys put up recently. Didn't expect this setback. take care and keep us posted.

[Bethan49 in reply to ap64]

It is a bit of a set back .. However it's a warning to be careful .. Ive probably been pushing myself to get back to 'normal'. .It's been a wake up call for us all. ..

We had fun .. us girls. . It was so good to process and share and cry and laugh .... and have a little drink !!!

Take care x

[Donegal]

Like you my neutrophils dropped to 0.2 4 months after BR. Then got virus after virus despite injections. Neutrophils have just stabilised now after 5 months. Good luck. Hopefully they'll come up and stay up.

[Bethan49 in reply to Donegal]

Thanks .. I hope they do stay up.. Its just a pain as there's no way of monitoring yourself! 0.24 is low ! Good luck to you too!

[MilliePerth]

Five months post FCR we are adjusting to our new reality. Normality seems a long way off; we just try to make the best of each day and deal with the new challenges as they arise. All the best.

[Bethan49 in reply to MilliePerth]

You're right there! I'm think I want my old normal but realising that may never happen!

How s thingsgoing with you?

[MilliePerth in reply to Bethan49]

We are pretty certain that is not going to happen for us, but working towards it!! My husband has just started on a Lenalidomide trial, as he has minimal residual disease. He is currently getting some very scary issues - maybe peripheral neuropathy/ maybe something else. Just starting next round of investigations. All the best.

[Bethan49 in reply to MilliePerth]

Will be praying for you both x make sure you tell the hospital about the nasty side effects .

I haven't had a bone marrow biopsy post chemo .. view of consultant is that it won't change anything .. It doesn't predict your length of remission. . I'm just taking it and trying not to over think it.

Take care x

[MilliePerth in reply to Bethan49]

Thank you. All the best, especially with your family.

[PaulaS Volunteer]

So sorry to hear about this, Bethan. Just as you think FCR is done and you can forget about CLL, something like this happens to remind us it's not quite that simple...

Maybe there should be more warnings given about Late Onset Neutropenia? Help people to be more aware.

I agree it would be great if there was a simple way of monitoring ourselves - like diabetics can monitor their own glucose levels. I suspect it wouldn't be so easy with neutrophil counts - but you never know. If teenagers can hack into supposedly highly-secure internet sites, maybe they could use those super brains to invent a do-it-yourself neutrophil counter??

Wishing you well,

Paula