avoiding infections

[Chirley]

Hi, I'm having problems with my ANC at the moment and my haematologist is not offering Neupogen shots. I'm booked for another BMB on the 8th of April and was wondering if he thought the shots would interfere with the biopsy results. Is this a possible reason for not treating my Neutropenia.

I'm worried about getting an infection and my GP appears to be upset with the haematologist for not ordering any treatment.

18 Jan 0.71
11 Feb 0.52
1 Mar 0.41
19 Mar 0.2
29 Mar 0.11

The clinical notes at the bottom of the last 3 blood results states that I'm at severe risk of overwhelming infection.

I realise that this is the risk that we all have but I'd rather avoid it if I can.

[squirrellypoo]

Oww, that looks to me like you should really be getting GCSF/Neupogen, too, as that's a pretty steep slide. Can you push your haematologist again or even get a second opinion? This is a pretty dangerous area to be playing with. And Neupogen can be self-administered so you should be able to keep some in your fridge and take them when your blood counts dip down too low (when I briefly needed them post-transplant this was how we did them. The shots are just subcutaneous and pre-dosed so you just pinch some belly fat and shove it in!).

As for things you can do, you really need to follow a strict neutropenic diet (if you do a google search, a lot of good materials for cancer patients come up, but there are even stricter guidelines for those with neutrophils under 0.2 that you should be following - I had a full book given to me during transplant). Stay away from soil, fresh flowers, anything to do with pet litter/droppings, and if possible, stay away from pets altogether. Wash your hands at very frequent intervals. Brush your teeth and use mouthwashes after each time you eat/drink to cut down on mouth bacteria (argh the name of the mouthwash is eluding me right now).

Are your WBC low, too? If so, then you need to stay away from crowds and sick people and newly-immunised kids, too. Even now I always wear gloves on public transport (as does my fiance) because it really does cut down on getting sick from all those people touching the handholds and buttons...

[Lamilu]

My Mom is having the same problem right now too. I don't know what ANC is but her counts are

WBC 0.9

Than it says (where the Neutrophils are usually posted)

WBC count to low to perform manual differential. Predominately Neutrophils and Lymphoctyes present on microscopic examination of the differential.

I am VERY worried about her getting infection.

Her nurse did say today to go home and wipe down with bleach her phones, knobs, railings etc. and of course saty away from crowds.


Susanne

[Chirley]

Thanks for the replies and advice.

My last total WCC was 0.6 This created a little bit of confusion for my GP when he said that my Neutrophil count was 0.6 and I was really happy, then he realised it was my total WCC and he did a bit of a double take. When he saw my actual neutrophil count the look on his face was priceless.

I have been advised not to go out in public, no shopping, movies socialising etc. But squirrelypoo (love that name) is the only one to have mentioned about the special diet. It makes perfect sense that some foods should be avoided. I do own 2 dogs whom I love dearly and would rather risk infecton than parting with my dogs.

I have started having a problem with bleeding gums and I don't understand why. My last blood test showed that my platelets were low normal so that shouldn't cause gum bleeding. I saw the denstist this morning and he couldn't find anything wrong except that when he touched my gums they oozed blood very easily. I don't have any tooth problems or gingivitis. Any thoughts on why this should happen? I bought some special toothpaste and mouth wash (I think they may be iodine based) from the Pharmacy to see if that helps.

It's autumn here and there are a lot of viruses going around so I'm taking the GPs advice, staying in and reading a lot. So glad I don't have to worry about work.

Wishing you all health and happiness.

[Birgitta-A]

Hi Chirley,
Since I had neutropenic fever Sept 2007 I have lived as I have neutropenia though my counts are normal because I have been taking 2 Neupogen injections/week. As far as I know I have not had any infections since Sept 2007.

There are many sites about living with neutropenia. Here is one:
http://www.cancercenter.com/newslett...newsletter.cfm

We all know that we should avoid crowds (more than 8 persons), sick people etc. Don't use public lavatories. I only travel in my own car. I meet my youngest grand child outdoors. When I take care of him in the afternoons the staff at the day care unit put on his cloths and take him outside because I dare not go inside the day care unit.

Then I only eat cooked food and fruits that I peel myself.

We have to avoid all kinds of mold and other agents in the air as squirrellypoo wrote. Don't dig in the soil, don't cut grass, don't go near constructions like new buildings where they are working and the air can contain dust.

You love your dogs and I love my persian cats . When I comb them I use a mask and when I take care of their litter box I use gloves and mask. I drive one of my grand children to the stable once a week. I keep away from hay and all kinds of things that perhaps will fly in the air and infect my lungs.

We have all kinds of bacteria, virus and other agents in our body and when the neutrophils are very low they will attack us even if we are isolated .

Your bleeding gums could depend on that your platelets are dysfunctional. I use a very, very soft toth brush and never a mouth wash with alcohol.

I think you are right when you think that your doctor is waiting for a BMB - when I had neutropenic fever they started with Neupogen as soon as they had done a BMB.

Really good that you finally stopped working ! I don't think you have to stay indoors even if it is autumn - to take a walk outside every day and see the nature is good for everybodys health.

Happy Easter to all members of this forum!
Kind regards
Birgitta-A

[Neil Cuadra]

My wife is no longer neutropenic but she and I have stuck with many of the habits we learned when she was. We are careful when preparing food and careful about where we eat out and what we eat out. Here in Los Angeles, the county health department rates restaurants and assigns them letter grades that they must display in their windows. We stick to A-rated restaurants.

We also wash our hands more often than most people. Here is an article about washing produce.

With a low ANC you have to be very careful but everyone would do well to be more aware of the sources of infection and take common sense precautions to avoid them.

[Chirley]

Thank you very much for your replies. I have asked my family to buy me a supply of frozen and canned vegetables. I figure with that as well as pasta and meat I will still eat well but safely. I quite enjoy canned fruit and bananas anyway.

I took a long walk yesterday with one of my dogs (the other one is too old) and unfortunately she was attacked by a bull mastiff and suffered a nasty injury to her mouth. I took her to the vet and she had to have surgery, she stayed in hospital overnight but can come home today. My elderly father is picking her up for me. She is a chihuahua cross named Gidget and I have been very worried about her. Even my cat (Betty) seemed to miss her last night.

I don't have insurance for my pets so I should ask the owner of the mastiff to pay some of the vet bill but even if I have to pay the lot myself it doesn't matter as long as she's okay. I figure if you can't afford to look after your pets properly, you shouldn't have them.

I have made a decision to trust that my haematologist knows what he is doing and that if he doesn't think my neutropenia is an issue, then I have to trust his judgment. This is a leap of faith on my part and I don't readily trust other people. I have now literally and metaphorically put my life in his hands and it feels good to allow myself to to stop trying to control everything in my life. It's rather liberating.

We are having a beautiful sunny warm autumn Easter Friday and I'm going to sit in the sun and read my book.

Best wishes to all of you.

[Neil Cuadra]

If your treatment center is like ours, the hematologist gives general instructions about lifestyle issues (like "avoid infections!") but there are nutritionists and other specialists on staff who can give you more details. We were given handouts on living with neutropenia, food charts, and other information that was more than the doctor would have gone over with us.

[Birgitta-A]

Hi Chirley,
How terrible that your poor little Gidget was attacked by a bull mastiff who must be 30 times as big as Gidget !

You know all kinds of English bull dogs, bull mastiffs, bull terriers, American Staffordshire terriers, pit bull terriers etc can be dangerous when they get older even if they are very kind when they are young. In Denmark they have prohibited American Staffordshire Terriers and pit bull terriers because the older dogs often attack people and other dogs. If I had a dog I should avoid all contact with all kinds of bull dogs.

Hope Gidget is recovering OK!
Kind regards
Birgitta-A

[Deanna16]

Hi there! When my ANC went to it's lowest point (not as low as yours though, gasp!) my dr. wanted to administer the neupogen as well but specifically told me she could not without doing the BMB first because it could alter the results of the biopsy (that was the BMB that contributed to my diagnosis). so I hope that info helps. Also, since my diagnosis and fluctuating low to very low ANC and WBC I have always had to take a round of antibiotics event to get my teeth just cleaned at the dentist. And lots of the other precautionary measures mentioned by everyone here. but I'm a mom of three (9,8,2) so i live with walking petri dishes Needless to say there is lots of handwashing and wiping down going on in my house -- even more than I use to do. Good luck next week!!!!

[Chirley]

Thanks Deanna,

I was concerned about going to the dentist because my father has to have antibiotic cover for any dental work due to a mitral valve problem so I knew there were risks involved. The dentist didn't find anything he had to work on but suggested that the dental hygeinist cleaned my teeth while I was there. (don't they always..money, money, money) Anyway, this always makes my mouth bleed and I told the dentist that I would need antibiotic cover. He said it wasn't necessary so I walked out without having them cleaned. I wasn't going to take any risks.

Just an update on my injured Gidget dog. She looks so cute with her whiskas shaved off and big white stitches sticking out. The vet had to do a flap on her left lip but wasn't sure if the blood supply was good enough and warned me that the flap could die. But at this point in time it's looking good. The inside of her mouth is still a mess and she sill has a big hole where some of her teeth had to be taken out. She is taking it stoically and seems to be showing it off to anybody who visits. She is being spoiled with soft foods like liverwurst (good for hiding tablets).

I think this is the first time I have looked forward to a BMB but I can't wait for it to be over to see if there have been any changes and to be able to have some neupogen and start going out in public again.

Health and happiness.

[ann]

Good for you! You should have walked out on that dentist. Good to hear that your "baby" is doing well. I love dogs but at this time we do not have one. Our "grandpup" comes over when our Granddaughter comes to see us each week. A boxer, he is such a wuss. He is deathly afraid of our grandson who is a policeman and 6'3". When our grandpup comes he spends a good part of his time looking at the front door watching for that big bad man to walk in. Our grandson would love to be friends but Unagi is a rescue dog and we think he may have been in a household where the police came in and arrested his owner. He was just a puppy when he was rescued, but they never forget.
I will keep you in my prayers and hope that you feel better soon. God bless you.

[Chirley]

Hello,

I just received a phone call from my GP. This mornings blood test shows that my neutrophil count is now less than 0.1 but oddly enough my Hb is better than it has been for a long time. Only 1 more day to my BMB and then hopefully some treatment for my WCC.

Update on Gidget, her cheek flap is looking good and she is much more comfortable when she eats. She was supposed to go back to the vet on Thursday but that is my BMB day so I will have her stitches taken out on Friday.

wishing you health and happiness.

[Chirley]

Hi,

Well I'm in day care post BMB and having a 3 unit transfusion. I think I'm as about as angry as I've ever been and I don't know what to do about it.

My haematologist walked in this morning and said that he thought my GP must be worried about my Neut count and then he laughed. I told him that I was worried too, he replied that I shouldn't worry and that it was okay for me to go out and do whatever I want. Then he started the BMB, I went to sleep and when I woke up he was gone. The nurses tried to contact him about Lasix with my transfusion (4 hours ago) but he hasn't answered.

My blood test today showed that my Neuts have increased to 0.2 again and my lymphs are 0.2 as well. I think this is still very worrying low especially when the Haematologist had a nasty cold and didn't wear a mask.

I have to come back in a weeks time for the BMB result, so a least another week without any Neupogen. Cranky isn't the word for it.

I would like another opinion but without the last 3 BMB results it would be difficult for another doctor to determine the problem. (my haematologist does his own BMB and because he is in charge of a laboratory as well he does the examination as well.) I have never been given a copy of the BMBs that he has done.

Just to top off a great day, I just got a phone call saying the next door neighbours have pulled down the dividing fence (newish fence in good condidition) and their 2 dogs are wandering around in my yard. I'm pleased I locked my dogs in the house because my neighbours dogs are big (don't know the breed ? ridgebacks) and loud and agressive. I'm just in the mood for a fight, so they had better have put the fence up by the time I get home. These neighbours are okay most of the time but they regularly get drunk then they fight and swear (she's the worse) and run around on the street shouting at each other and threatening to kill people. These are the only neighbours like this and everyone is sick of them destroying the peace in an otherwise peaceful neighbourhood.

Neighbours, can't live with them, can't live without them. (but I'd like to try)


Wishing you a better day than I've had.

[Birgitta-A]

Hi Chirley,
When your doctor (is he disturbed in some strange way ?) has got the BMB I think you could start with Neupogen. They don't have to wait for the BMB result.

How terrible with the neighbours and their dogs (Rhodesian ridgeback?) ! Hope you manage to make them put up the fence now.
Kind regards
Birgitta-A

[Helen Robinson]

Hello Chirley

You are certainly in a bind. The haematologist is probably used to people having transplants who end up with almost no neutrophylls. We were told that 0.1 was considered low. Your GP should be able to get copies of your BMB results as he needs to be informed properly of your condition.

Is your haem dr attached to a large hospital in Brisbane?

Please go straight to emergency if your temp rises to 38.4 as you would need IV antibiotics. We still boil drinking water your use well filtered water and I watch David's temp if he is off colour. When he had a neutropenic fever while on Revlimid his temp rose very quickly.

I hope you have some satisfaction and answers soon.
Helen

[Chirley]

Thank you Helen and Birgitta.

I've calmed down a bit now. My haematologist looked ill. I asked him if he was okay and he said he had "a nasty virus". As much as I felt sorry for him, I also thought of myself being closeted away from people for weeks trying to avoid what he was exposing me to. I think he should at least have worn a mask.

I have made the decision to attend the nearest public hospital with my blood results and see if I can get an opinion on whether the haematologist is correct in not treating the neutropenia. This way I get a 2nd opinion, my GP will be more reassured and if my haematologist is right then he won't be aware that I got another opinion. If he's wrong then I will have started the ball rolling to find another haematologist.

When I got home from day care yesterday the neighbours had put the fence back up in a very temporary way. It's certainly no longer dog proof. I will have to wait for a time when they aren't drunk to approach them and ask them if they have a plan for replacing the fence the way it was. I hate not being on good terms with neighbours and this could turn into a very tricky problem. I just have to keep my dogs in the house all the time or be with them when they go outside, it's frustrating but the only solution at the moment.

PS I feel great after my transfusion.

Health and Happiness