Just thought I would update myself since the last time I wrote. I finished my FCR in September 2012 and in the October was told "You're in Haematological Remission" ... Brilliant - so I thought until last week.
Three weeks ago I became ill with what I thought was a 48 hour diarrheoa episode. 8 days later I still have it, so I called 111 (UK) and they made me an appointment to see a doctor at the local hospital. He informed me that I had Norovirus and that there was little he could do other than for me to visit my GP the following day for a blood tests. So, I visited my GP and she says not only do I have Norovirus but I also have Jaundice ......Oooopppps. The results from the blood test (48 hours later)shows that I am Neutropenic with a WBC of 1.7. Another blood test 4 days after that result showed a WBC of 1.9!!
Just wondered if anyone else had a similar experience with their WBC and what the outcome was? The initial reaction from my GP was to get me admitted for a top-up and to prevent further infection(s) but my Haematologist disagreed. From memory, my White Cells took a hammering whilst of FCR and have never really recovered.
Your thoughts please?
Many thanks
Colin
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I suggest you get a consultation with your heame as soon as possible, to map a treatment course for the neutropenia and find out what is causing the jaundice. Norovirus can't be treated but stay very well hydrated...more here...
Firstly I am not a doctor and cannot give medical advice, however my experiences as a patient might be of assistance. We are all different and our experiences are variable and my journey through jaundice and CLL is perhaps rare, as the doctors are always surprised by the results. Having said that if you study the textbooks I am not unique, with many others having the same recorded medical history.
Jaundice is commonly caused by a high level of bilirubin in the blood. Normal is from 0 to 17 and mine was 150.! Manual feels of my spleen showed enlargement due to the CLL, and a scan showed abdominal nodes enlarged, as well as an enlarged spleen and liver.
After many many tests I was told that my high bilirubin was Gibson’s Disease, not uncommon, and generally considered a benign disease with no further action. However it is also noted in all the medical literature that a high bilirubin level often goes with IBS, or Irritable Bowel Syndrome. This is uncomfortable for the patient due to diarrhoea, bloating and cramping, and I was experiencing some of this.
Now a function of the liver is to remove toxins that come into the body in food. The body considers spices, many herbs, alcohol and caffeine as toxins to be removed. I was enjoying quite a lot of spicy foods at that time. So with a knowledgeable and friendly doctor at my local hospital, we decided to remove all these toxins. No spices and no herbs in foods at all, reduced caffeine and reduced alcohol.
The results..?? Bilirubin level down to almost normal.. Last week it was at 32, a massive drop from 150.!! Note here that I made no other changes in diet, exercise or way of life during the first tests, and during the last 8 years if I do try some spices the bilirubin level goes back up again.
In my opinion the CLL, or the enlarged abdominal lymph nodes, has affected the functioning of my liver and hence the high bilirubin level.
When I mention all this to a new GP, or doctor in oncology, they are always a bit surprised, but equally they do acknowledge that spices can affect the liver.
This might NOT be your particular problem, but hey, a simple change in diet COULD make the difference, and it’s easy to do. Just read the food labels and if it says ‘ added pepper and spices ‘, just leave it on the supermarket shelf.
As regards my CLL, no treatment as yet, just on the watch and wait, counts only rising slowly.
My you've had a rough and no doubt painful few weeks. I hope you are now on the mend and would be very interested in how you go.
Kwenda - Fascinating to hear your experiences with spices and liver function. It is well worth remembering that the liver is THE essential organ involved in breaking down and neutralising toxins so they can be eliminated from the body. People don't live long with a bad liver, so it is a very accurately named organ!
In my opinion, anyone with CLL should take extra care of their liver to improve their ability to cope with chemotherapy if/when that becomes necessary.
The standard biochemical blood tests include the following tests that reflect the health of your liver (but can also be influenced by other factors).
ALP=Alkaline Phosphatase
ALT= Alanine Aminotransferase
AST=Aspartate Aminotransferase
Your doctor/haematologist keeps an eye on these - particularly if you are on specific medications long term that are known to potentially affect the liver. That's one very good reason why everyone should inform their doctor and haematologist what medications, etc they are taking, including over the counter drugs AND health supplements. Even high quantities of green tea capsules can knock these out of the normal range.
I finished FCR 2 years ago and was fine for about 6 months, then was hospitalised with a fungal chest infection and also ended up with the dreaded norovirus. It seems my neutrophils had dropped to about 0.7.
I was treated with injections in the tummy (can't remember what these were) and imunoglobulin infusions once a month for about 4 months. This seemed to work and at my last 2 consultations my bloods were within normal range.
FCR seems to play havoc with my blood counts for the first 12 months after treatment. The positive is since then I've been fine, not even a cold this winter.
You have been through the mill. Dr Samir Agrawal has forwarded his thoughts following your post:
"Dear Colin,
it is always difficult to give medical advice at a distance. Here are some of the things that need to be considered:
1) persistently low blood counts (any combination of low haemoglobin, neutrophils or platelets - or just one of them alone) are not unusual following FCR.
2) Viral infections, such as Noravirus, can be debilitating - but short-lived - even in otherwise healthy individuals without CLL. Occassionally, such viral problems persist and then warrant further investigation
3) Viral infections are commonly associated with a fall in the neutrophil count - even in the general population. So long as the count recovers after a week or two, there is no need for further investigations.
4) The jaundice - was this only a laboratory result or were you clinically "yellow" as well? - needs investigating on its own merits; once again, it may simply be due to the infection, rather than indicating a specific problem with the liver. In patients with CLL, infection and jaundice always raises the question of autoimmune haemolytic anaemia, which is usually obvious from the blood tests.
just touching on para 4. My billirubin count has been on the high side since I was diagnosed with CLL. Last week it was 29 and when I saw my GP the whites of my eyes were a deep yellow and my skin a light tinge. I also forgot to mention that I was also diagnosed with ITP back in July 2011. Then my platelets were then 51 and have been up and down since and during my treatment took a battering. My platelets have been steady since finishing FCR and as of last week were 229 :-). I know when things are not right when I wake up I have (what appears to be) large white patches on the surface of my skin over my chest/stomach. This morning I woke looking like a patchwork quilt with these patches were over my chest/stomach and down my right arm down to my wrist. It's as though my blood is not feeding the surface skin area whilst I'm asleep. Of course it could be vise-versa ie red patches over white!! I'm due to have another blood test on 7/5 and then a check up in Haematolgy along with bloods on 22/5 .... we'll see what the outcome brings.
1) a bilirubin of 29 is high, but not very high; if you have had such levels for much of the time since your diagnosis of CLL, then it may turn out you have Gilbert's syndrome (a benign condition which leads to a slightly raised bilirubin!) This does NOT require any specific investigation.
2) As your platelet count is normal, this is a good sign and clearly you do not have active ITP at the moment and, in this respect at least, your bone marrow function is good.
Hi After FCR my immune system really did not exist and is still low two yrs after treatment, but it is still working and I try as much as possible to advoid infections. Rather than jaundice I had shingles. My platlets are also low and have never really recovered but the Dr's do not semm to be bothered too much. I was told that low blood counts are the price you pay for chemo. Best wishes.
Update: For the past 6 months + I've been having twice weekly G-CSF injections.My last count on my nuetrophils were 1.85 (6 weeks ago) and that's the highest it been since March/April. My last WBC was 3.2 with a slightly high Hb. The G-CSF are increasingly becoming more uncomfortable with a great deal of bone pains for 24 hours after the injection. I've been instructed by my Haematologist to stop the injections 10 days before he sees me again to see how low my blood goes. My last one (for this period) was yesterday, so we'll see how it goes. Any thoughts on this?
Sorry to say, but bone pain is a well known side effect of bone marrow stimulating drugs. Hopefully your marrow's ability to function without help has improved in the last 6 months.
I presume you are now very familiar with the Neutropenic Diet covered in the pinned question?:
There's much more on this site about living with a compromised immune system. It's not easy, but a few simple techniques can dramatically improve your quality of life.
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