Neutropenia zzzz

[Hitchmo]

Hello all!

Fatigue seems to be a popular theme the past few days, so I'm here to ask about neutropenia. My 6th round was delayed last Tuesday because of low neutrophils, and I've been in bed more or less ever since. After 5 days I'm starting to wonder if I can possibly still be this tired or if maybe I'm a bit depressed after the disappointment of having my last round pushed back 10 days.

As I'm so far from home/friends/family, I've been doing this all on my own more or less, and there are times I could just cry, because I wish I had someone around even to put the kettle on. (And when I say I "could" cry, what I mean is I actually do cry.) I was neutropenic in December as well and seem to remember being in bed crying for a good solid 2-3 weeks.

So I'm curious what anyone's experience with neutropenia has been -- how long it lasted, and if you too felt super weepy from it? Anything I can do to push through it? I honestly feel like the emotional side effects from all this have been way worse than the physical ones, but maybe I'm a huge drama queen

Love from Kerry xx

[HogwartsDK]

Oh Kerry I haven't had any problems with my bloods but I have to agree with you about the emotional side effects! I cry often and find it overwhelming sometimes but do feel better for getting it off my chest!!! I think because you can do things to help the physical symptoms they are easier to manage, emotional are more difficult but I am a firm believer in letting it all out in whatever way works for you!!!

Hugs and good vibes to you!!!

Dxx

[Hitchmo in reply to HogwartsDK]

You're so right. If there were a pill like Emend but to make you less weepy I'd take that in an instant! Back in December I went to the local cancer support centre a few times and talked to a counsellor and had reiki, etc, and it was amazingly helpful. If I'm still struggling in a few days time, I'll give them a call. Thanks ever so much and sending hugs and good wishes back to you! xx

[grannylo]

Hi Kerry. Low neutrophils, platelets and haemoglobin were always an issue for me. Had delays at 3rd and 5th cycles. Had to have blood transfusions, 6 in all throughout my treatment. You will feel exhausted. I was a bit teary and weary as well. You just want to keep going and get the next chemo done. But please remember to keep an eye on your temperature, as you are at risk of complications due to infections if you are neutropenic. I had a 5 day mini break at my local hospital with flu, just a fortnight ago, due to bring neutropenic. Intravenous antibiotics, fluids, an anti viral inhaler and aciclovir for the mother of cold sores. Fortunately I got In before things got serious. I used the cancer helpline and they were very efficient. Was checking in 45 mins after phone call.

You have done really well. You started just 5 weeks after me and we are still just 5 weeks apart. Once again it is the cumulative effect of the chemo that makes the cells struggle to get back to normal levels.

Tough being so far away from family. Sometimes you just need a hug.

BIG HUGS . Lx💙

[Hitchmo in reply to grannylo]

You're absolutely right - I did need that hug. Thank you And I could use a mini break too but not in the hospital like yours! You poor thing. I'm monitoring my temp, avoiding crowds, handwashing like crazy, etc. Overall I feel fairly good, except for the exhaustion.

I just have to be patient; I'm so close to the finish line! I will try to focus all my energy in a positive way towards being well enough to try for my 6th round again on Friday. Thanks for the support and inspiration, Loraine! xx

[Beth25]

Hi Kerry, you poor thing, it's no fun to be far from home when you're sick. My neutrophils experience was similar - problems with them all the way. I too ended up in hospital for a couple of weeks early last year with an infection which my depleted white cells couldn't fight off. Now I've just finished 3rd line (weekly carbo taxol) and so when i had the first delay three weeks in I asked about injections you can get to boost the white blood cells and stop this happening. I know others on this site have had them and were very helpful to me when I posted my plea for help. However whether or not they are routinely precribes depends what health board area you are in. I had to fight to get them and in the end had to pay for them as they were not generally available to patients at my stage in my health board area. The injections I had were Filgrastim, which come under several brand names such as Nivestim, which was the one I had, Neupogen etc. There's a link to info about them on the Macmillan website

macmillan.org.uk/informatio...

It's maybe unlikely that they would offer this if you're near the end of your treatment, but god forbid you are ever in this situation again it would be worth asking about it from the beginning given your experience this time round. I'm so glad I did as my white cell count was higher than its ever been through the rest of my treatment and I got through it infection free. I did have one further delay, but that was due to low platelets which sadly the injections don't fix. But daily papaya, pomegranate juice and spinach with everything helped to get them through the rest!

Feeling so tired is relentless and does make you feel emotionally very fragile. I saw a counsellor who works with my oncology department which helped. I think I sobbed through the entire first session but just getting everything out to someone who would listen objectively and non judgementally was a great release and I did feel better for it. Perhaps you could ask your CNS about that - it should be available even after treatment has finished. Although I'm lucky that most of my friends and family are nearby, they can't be there all the time and I know what you mean about just having someone to put the kettle on. And give you a hug. It's a poor substitute but maybe you could make a flask of tea or soup to have by your bedside if there's really no-one who could make it for you. Make sure those faraway people know how important their supportive texts and emails are though. I think that unless people have been through this themselves they can't possibly realise the effect it has emotionally and can sometimes think that if we're getting treatment we might feel a bit sick but that everything else will be fine.

if you can I'd say try to get outside, weather permitting and when your really yucky days have passed, even if it's just to sit for a while if you can't face walking for any distance. It does help to lift the spirits and a bit of exercise will make you feel better too. Finally, although it probably doesn't seem likely a the moment, things really really won't always be this bad and you will start to feel better - brighter days are ahead of you.

Sending a big virtual hug, Beth X

[Hitchmo in reply to Beth25]

Thank you so much for taking the time to write all this, Beth -- it really did give me a boost! This is all fantastic advice. And I did start by going out for a bit of a walk today -- one of those rare Manchester days when it's not raining! When I got back I had a call from one of the consultants and we had a good talk. She said she'd lower my dose for the final round and hopefully that would make things easier on me. I will ask about the injections too when I go in on Friday. A big congratulations to you on finishing your latest course, and I sincerely hope it's all upwards and onwards for you from here on out. Thanks very much again & sending a big hug back! Kerry xx

[Shqiperia]

Hi Kerry ,

Just got home and my last chemo was canceled do to neutropenia as well . I have to wait one week but not sure what to do . I trying to take it easy but I have my 2 year old he has been sick with a cold and I need to take care of him , and I really hope I don't get sick too . I feel so tired and I was so ready to finish the chemo today ...

Good luck to you

[Hitchmo in reply to Shqiperia]

Nooooo! Oh I'm so sorry to hear it. I know how frustrating it is to be so close then turned away. I really hope you manage not to catch your little boy's cold. Hopefully there's someone to help you out a bit? Looking after a 2yo is exhausting even when we're fighting fit. Try to rest when you can and go nuts with the hand sanitizer, etc. Take good care please! x

[Lily-Anne]

Aww sorry you are feeling like this. It seems fatigue and tears is the on the chemo menu, I never cry and been bawling reasonably regularly or biting people's heads off. I just told my son I'd disown him if he left his girlfriend - oops!!

My bloods seem to have been okay but it has to be the whole enormity of this OC and the treatment. I seem to be looking for someone to say, and ok when it's done you will be okay, yet nobody will ever say that, and that upsets me. The lack of guarantee, no matter how much we go through is a tough road.

Be kind to yourself, your body has been through a lot.

LA xx

[Hitchmo in reply to Lily-Anne]

It's so frustrating trying to get a straight answer about anything, isn't it? And do you know what I think really affects one's mood too? Coming down off the steroids. I've noticed that in week 2 I'm either a gibbering wreck or extremely irritable and snappish, which isn't really like me. Although I'm sure I could find some people who'd disagree with that

Consequently, they took me off the at-home steroids the last few rounds and it helped, although without them in my system I sleep for about 4-5 days straight after treatment. Which to me is preferable to the insane insomnia they bring on. I spoke with a consultant today and she's going to lower my dose for the 6th and final round, in hopes it won't knock me back quite as hard.

Just keep breathing, LA - I've found the Calm app for iPhone and some guided meditations I found on YouTube help stem my rage and anxiety a bit. I also got a lot out of reading Mindfulness-Based Cancer Recovery by Linda E. Carlson and Michael Speca. Sending you a hug and all best wishes.

Kerry xx

[Beth25 in reply to Hitchmo]

Ah, that's the thing I meant to say earlier - Mindfulness! Did a short course last year and it was hugely helpful. I didn't know about the book but will look out for it. x

[Hitchmo in reply to Beth25]

It does help, doesn't it? And I did 4 reiki sessions at my local support centre and -- I don't know, I can't explain it -- but it did something. Placebo effect or not, I felt like it released a lot of emotional pain. Maybe it was just from having a hospital-based experience that didn't involve someone jabbing something into me or ripping something out of me? But it was lovely. x

[Hidden]

I had the same problems as you with first line carboplatin: frustrating delays because of low neutrophils and blood transfusions because of low haemoglobin.

No problems at all with second and third line.

For both I had/have the G-CSF injections and I also followed a diet I intended to boost my blood counts.

If I remember right, the onc suggested the injections at second line (why not at first?) , but I had to remind her at third line.

So it's worth asking if you could have them, I think.

[Hitchmo in reply to Hidden]

Brilliant, thanks so much! I will absolutely ask about the injections when I go in on Friday, And I should probably take a good hard look at my nutrition too. It's kind of amazing how they can recommend something then forget about it, isn't it? I have yet to see the same consultant twice; it's a different one every time and each always asks me why the previous one put me on or took me off something. Like I should know. Thanks for the reply and I hope you're doing well. x