This topic contains 13 replies, has 12 voices, and was last updated by 
jmsmyth 12 years, 7 months ago.
Hi All
Can anyone give me info on this. Frank was at consultant today. They were pleased with calcium, protein, light chains. But were concerned about white cells and Neutrophils (never heard of them). White cell count was 2.4 and Neutrophils .82. She Asked if he had even ill or had a fever but the answer was no. Also an appointment was requested 8 weeks ago for CAT scan and it was not even on system. When we got home the hospital called to ask Frank to come back next Wednesday to do bloods again. Does anyone know if this is something to worry about and is 8 weeks normal waiting period for scan. We are supposed to be going to Spain on 30th and I want to put it off but Frank says he is going. Any info will be appreciated.
Love Jean x
Hi Jean,
sorry to hear Frank is having concerns with his blood results. White blood cells and more specifically neutrophils are the cells that fight infection. These levels are the ones most closely watched after a Stem cell transplant. Frank's medical team will be concerned because his neutrophil levels are beginning to look rather low. Look in the information section of the website for the normal ranges, sorry I can't remember them exactly, but i do know that below 0.5 for neutrophils is considered to be neutropenic and this will put him at risk of infection. If I were you I would call the consultant or your lead nurse if you have one to check on any precautions. It is possible that Frank may be susceptible to infection and it might be as well to avoid contact with a lot of people until his neutrophils are up. However I do know that these levels can change very quickly, especially if one is fighting an infection of some sort. As for waiting 8 weeks for a scan, I dont think that's on. I would be stamping my foot if I were you!
I hope you both keep well and can get to the bottom of this soon,
Much love,
Mari x
hello Jean
sorry Frank is having trouble white cells and neutrophils are all to do with fighting infection it looks like Franks white cells are to low so the doctor is worried about infection he may be brewing a cold. I think 8 weeks is much to long to wait for a scan that needs hurrying up, when you go to spain you will have to try and keep Frank from infection I use first defense on the plane to try and avoid colds we are going to Skiathos on the 4th of may I hope you can get away and have a lovely time some sun will do us all good:-) 😎
Love Jo xxx
Hi Jean
Sorry to hear Frank's blood's are not right :-/ as for me I aint a clue to be honest just wanted to wish you and Frank well.
Love
Tom "Onwards and Upwards" xxx
Dear Jean,
Hi – this is Eva. I've written about this recently under another heading but you may not find it….
I've had exactly the same problem as Frank. 'Normal' neutrophils range from 2.0 to 7.0. This is an even more important reading than our level of white cells, as it's meant to be a 'truer' indicator of whether we can mount an immune response to a problem or not….
As a result of about ten months on Thaildomide, my neutrophils started dipping to around 1.2 or 1.3. This was not good, but I was ok. I was told not to worry. Eventually everyone around me was succumbing to a virus/flu type thing. I was surprised I didn't get it. Then I sat in a small car with the windows up with someone who, I realised retrospectively, was about to get this illness and therefore in its most infectious phase. I got ill. I was out of action for a week. I wasn't dangerously ill and didn't seem worse than other 'healthy' people who had the same virus. However, my neutrophils dropped to 0.7. My consultant said I had to be off the myeloma treatment immediately and I had to begin a course of antibiotics. Because I live in a remote area, I has previously told to keep one course of ciprofloxacin and one course of augmentin in the house. If I got a bug, I could ring the consultant, and if it was late at night or on a Sunday, I might be instructed to begin one of these antibiotics without even seeing the local GP. And that's what happened. I think the antibiotic was to try and avoid me catching something nasty like pneumonia while my system was battling a flu. It was explained to me that if I had a bacterial infection my neutrophils might rise and if I had a virus they might drop. Hence the rather bad reading of 0.7.
When I contacted my local doctor, he almost insisted I go to hospital and stay there for monitoring. I didn't go. A friend who also has myeloma had a virus in the same week and caught c-difficile – a bug that's quite resistant – in hospital.
So, it's a difficult decision for you and Frank. My neutrophils have gone up to 1.3 after a ten day break in myeloma treatment, so I can start it again. Perhaps your consultant will guide you. Ask if you should have some antibiotics with you in case you develop a fever. Of course, you can't take them without asking a doctor. Can you be in email contact with an assistant to your consultant perhaps? A blood test can also be done in your local surgery and sent off to the hospital. Results might be available within 48 hours if it's important. For quite a while I was going to public places with neutrophils of 1.2, but once I got the flu, my impression is that I was in greater danger than an average person and needed close minitoring and a course of antibiotics. Only you know if you can get that level of attention in Spain if anything happens. If the neutrophils go anywhere near 0.5, most doctors would want to keep a very close eye on someone. Remember too, that dex can mask some symptoms of infections. Something to ask the doc about.
Best,
Eva
Hi Jean, I would try to keep Frank, and yourself of course, away from anybody with a cold/cough etc… if you can. Ask friends not to call if they have been in contact with someone who has had any form of infection. Avoiding shaking hands or any physical contact with other people is something else you can do.
The normal range for a healthy male is White Blood Count (WBC) 4 to 11 and Neutrophils (Neuts) 2.0 to 7.5. I do not think you need to be alarmed, just cautious. During treatment, April 2010, my WBC went to 0.74 and Neuts to 0.19 and I am still standing:-D. However my wife put me into virtual quarantine end of story 😉 until the next blood test when they had bounced back up again. Cautious with a capital C
Kindest regards – Vasbyte
David
Hi Jean,
I know that the magic number for Neutrofils is 0.5 after a SCT… on the up and allowed home to recover, with care. I was neutropenic 0.1 when my Hickman line got infected and spent a hairy week waiting for it to rise. I am told that if my Neutrofils drop under 1.0 I have to be admitted… it seems to be the policy at my hospital. Still, if Frank is on good anti-biotics then he may well pick up quickly anyway… but I'd keep an eye on his temperature and if he gets to fever I wouldn't hesitate about ringing the bleep holder at the hospital.
Dai.
Hi Jean
I know how worrying this can be but can only hope that they are sorting things out for you about the scan.
I don´t have much else to add but just wanted to know I wish you well and hope things improve soon.
Love Carol xxx
Hi Jean
Like others have said, try not to worry too much. But they are totally right that Frank should just be careful who he is around over the next week or so, especially if he wants to go to Spain! He needs to be as fit as possible if he is going to insist on going. I'd also ask his consultant what he thinks. I'm off to Beijing in August but I know that our consultant will a) want me as healthy as possible and b) will send me with antibiotics in case I get ill. Pre transplant when I had low neutrophils etc even when we just went to Devon, they sent me with a letter for a hospital and also antibiotics just in case. I didn't need either, but it did put my mind at rest that I had both things!
In terms of having more bloods next week, I think that is good. They want to see if it is just an anomaly I would think…and hopefully all will be better by then. Sometimes these things are just a matter of bad timing!
The CAT scan – can't believe you haven't even had an appointment date…not very good at all! If you don't get one soon, I would write in and complain…it'll probably happen pretty fast if you do that!!
But speak to the consultant and see what he thinks about Spain….the only concern I would have is being on a plane with such low neutrophils – more likely to get an infection.
Take care and speak soon….it's been a long time!
love
Debs x
Hi Jean
It looks if hubby has a bit of man flue bugs,if you feel worried about them before having a good holiday,for your own peace of mind,go to the doctor,s
Jean if you have an infection your pp go hay wire,
I would press for an early scan,I still find it hard to understand why a PET scan in not used in Myeloma,that shows any activity outside the bones,
Again it seems to be post code lottery.The machines are there,just never been used for Myeloma,what does it take for experts to think out of the box.Eve
Thank you all for your informative replies. Frank contacted hospital about antibiotics and was told that if he got an infection – temperature he would have to contact them as the antibiotic would have to be given introveniously. What I really don't understand is that Frank has never had any treatment. He is SMM. he is going to contact the Radiotherapy department tomorrow to see where he is as regards the appointment. As he is not on the system I take it that somewhere along the line he has been mislaid. Hope we get it sorted soon. I think that Spain is better left till another day. I also,thing that I will impose self quarantine. Once I really appreciate your advice.
Many thanks
Jean x
Hi Jean
Keep the appointments, they may bounce back as the others have said. I had a neutropaenia of 0.6 – 0.9 for that year before my diagnosis – which was missed- twice and apparently lots of fluctuation here can be one of the indicators of smouldering mm. They did ask if I had any infections in that time… I never did.
Also I've now got most of my meds for NZ , antivirals for all the time I'm there, 2 different types of antibiotics and when to use them, calcium, aspirin, revlimid, a thermometer, and they think heparin injections for prior to each long haul flight and a great long letter for emergency use. Now I just need a large bag!
Love Helen
Hi Was just wondering what first defence is and where you get it from.
Thanks Trish xx
Hi Trish
Get first defence from chemist. We use it at the first sign of cold, sore throat – really anything. also use it when we are flying. I asked our doctor about it and he said it was good to use it. We ding it good.
Love Jean
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