Hi! I'm fine in myself but been for bloods and they weren't too happy..said immune system compromised...
Hb - 8.6
Wbc -1.15
Plts- .151
Neuts - o.58
Was going away for a few days but feel it may be too risky after the nurse said that I must find out where my nearest hospital is.
Was going to travel to London to go to Harry Potter... What should I do?
Thoroughly disappointed as feel ok but think I am putting myself at risk...
Advice?
Oh bless you. Sorry for grumbling about mine. Trouble is, if you go away then spend all your time worrying, thats not nice either. Any other treat you can have to compensate?
Peggy
I wouldn't go to the theatre... and you should be very careful about food issues, particularly in restaurants...
~chris
It's your call Bethan but your neuts are very low to be around sneezing, snotty, less than hygienic people and environments. Would I go in your situation? Probably not because an infection could seriously compromise not only your future treatments but more importantly your resistance at this stage.
I think you know the answer at this stage. Loads of places to go once you're more resilient. Disappointing I know 
Best wishes,
Newdawn
Bethan,
My oncologist point blank said no to a trip I was planning during chemo a few years ago. Even harder was not being around my three grandchildren. She was correct in saying it wasn't worth the risk at that time with my numbers being so low. It was worth delaying the trip. Chin up. You'll get through this too, and will even ask yourself later "what was I thinking?" I was especially careful about fresh fruit and vegetables. If I didn't grow it, I cooked it. We're here for you. Kind regards, Sally
Wise words...thank you x
Agree with everything that's been said. You do not need to compromise (maybe) your future treatments.
Take extra care.
Sue
Watch what you eat. Be extra careful with salads
Etc .
Don't think it's worth the risk at the moment. Disappointing but better to be vigilant and safe rather than sorry😷😷😷
Hi Bethan49
Disappointing though it may be, to enter into any environment such as the theatre, public transport, restaurants etc would I feel be putting yourself at serious risk.
You will be able after treatment to do all the things you want to do with your boys, sad and upsetting though it is to deny yourself I feel you would jeopardise your health with such low immunity.
Of course it is entirely your decision I respect that, and can only apologise for being blunt.
Wishing you a much happier future.
Best wishes
Bubnjay1
I was told by my consultant not to stop going to the theatre during treatment cycle but your bloods are very low and Harry Potter sounds like lots and lots of children. It is a risk but your choice.
During therapy when my neuts were low the chemo unit nurses phoned me at least daily to check on my health because it was a serious concern.
When travelling across country for a few days I took my chemo nurse contact numbers just in case I needed advice or I needed to go to A and E.
My consultant wants me to carry on life normally but with rest. This I have done successfully and gone to adult theatre but I must admit I once sat with a hankie over my mouth and nose when a lady wouldn't stop coughing.
If I were you Bethan I would save your trip to a later date .There is no point in going away and spending most of the time worrying if anyone is coughing or spluttering near you .You would also be using public toilets too and we all know what they can be like with some of the people that use them .
Make a wish list of all the things you are going to do once your bloods are better Bethan and that way you can look forward .
Keep smiling
Brenda☺️
My greatest disappointment when my neutraphils were really low was not being able to see my young grandchildren, my choice. I then discovered 'The IPhone' and 'FaceTime' and had the pleasure of 'face to face' chats.
I too would suggest waiting to take your trip to London. I felt really well on my first round of FCR went to Sainsburys with my husband, two days later I had a cold and a week later I was in hospital with pneumonia! Take care of yourself.
Bethan - I suspect that you already know the answer, but are fighting it in your head. I'm good at trying to talk myself out of having medical considerations that I don't want to acknowledge. Thankfully I have given in to reason enough times to stay out of trouble. Not only are your neuts. low, but an hgb in the 8s concerns me, because when mine went that low I passed out in public three times - a good way to get attention, but not the kind I wanted.
Hopefully you can reschedule this trip for a time when you are healthier and can enjoy it without a cloud over your head.
I have not yet been into low Neut territory, so won't add to the advice others have given. However, your Hb is very low - do you know why? Is something being done about this?
Not yet ...they mentioned blood transfusion but hoping it may pick up over the next week.
Blood transfusion might pick HB levels up (maybe only in short term), but does not explain WHY yours is low.....you need to question why!
Quarry, Bethan is two weeks away from her second round of FCR, all going well, so her anaemia is most likely the side effect of her treatment on her bone marrow. But yes, it certainly needs to be monitored carefully to ensure that FCR is highly likely to be the cause and transfusions given as needed. Bethan49 , do contact your medical team if your breathlessness worsens - it's not a good idea to ignore worsening anaemia. Transfusions aren't given if not required...
Just had bloods..HB back up to 9.8 after eating everything green in sight! Neutrophylls slightly raised at 6.8 so being vigilant in safety.
Can I do anything to raise those neuts?
Great news! Your neutrophils are at a very healthy level at 6.8. As long as they stay above 1 you'll be fine. Just take excellent hand hygiene precautions and avoid any foods that could have a high bacteria content: healthunlocked.com/cllsuppo...
Neutrophil levels can drop fairly quickly; mine halved in a week when I developed neutropenia, so it will pay to stay cautious about avoiding infection. One of the more challenging side effects with FCR is that you can develop what is called Late Onset Neutropenia (LON) up to a year after finishing treatment and have no symptoms. Anyone needing G-CSF to get them through treatment also needs to be aware that there is a higher incidence of LON in that circumstance.
Neil
Feel silly....neutrophyll at 0.68....fine from .58 last week to .68. .... not so healthy! !!
Mine were 0.61 last week, up from 0.31 in April... Just be extra careful with all your hygiene.
Thanks Neil. So you think it'll he ok for next chemo next Friday?
Perhaps; it takes about 10 days for your bone marrow to make neutrophils if it has totally ceased doing so. Your body does keep some in store in your spleen and elsewhere...
If your ANC is below 1.0 in the blood test taken before your next FCR treatment, the usual practice is to administer a G-CSF drug (there's a range available) and hold off treatment until your ANC has improved.
I expect you are likely to need G-CSF injections to get your through all your remaining treatment - it's fairly common. Just take care and you'll be fine. It's nearly 2 years since my ANC was over 1!
Neil
I think I would ask the doctor. If you go, perhaps you can stick to cooked foods and wear a mask in the theater? They gave me a mask when I walked in the ER a couple of months ago.
Should I go to a CLL specialist?
Should I be encouraged with my blood test results?
Should I have a blood test
Sinusitis and bronchitis and cough that won't go away
I am still waiting for my CT scan results.
