Blood work results 😕

My hubby's last blood work results. We have CT scan scheduled because of his nausea and fatigue.

What do you think ?

[AussieNeil Partner Administrator]

Your husband is severely neutropenic and should avoid contact with anyone likely to be ill. He should also be very careful about what he eats, avoiding any food likely to have high levels of bacteria that could make him sick. Check out the pinned posts on neutropenic diet. This may be why he is suffering from nausea and fatigue because he is struggling to fight off infections.

More later.

Neil

[AussieNeil Partner Administrator in reply to AussieNeil]

Hi Carrie Anne,

You mentioned in your first post a week ago that your husband's neutrophil count was 0.38 and it is now 0.3. He has about 10% of the normal count, which is not enough for him to fight off any bugs he comes in contact with.

Your husband is also developing slight anaemia, which he shouldn't be noticing unless perhaps when he really exerts himself. While I have been living a neutropenic lifestyle since I was diagnosed with CLL from investigating my severe neutropenia, I'm not medically trained, but that level of anaemia should not be responsible for his fatigue, so it is either from his CLL (really the SLL form given his nomal lymphocyte count): healthunlocked.com/cllsuppo... or because he is battling infections - perhaps subclinically (he is unaware he is ill other than the fatigue). I suspect your husband's specialist has ordered the CT scan to check your husband's tumour load from enlarged internal nodes and spleen.

I'm very concerned that you previously said that "His specialist is not overly concerned as his blood work fluctuates." With that degree of neutropenia which is not improving, your husband's specialist should have given him clear instructions on how extremely careful he needs to be to avoid infections, and to be aware that he may not be able to fight off bugs that we all have in our bodies all the time.

So what do you do?

Your husband should be very careful when near anyone if he doesn't know whether they are healthy. Absolutely no crowds and keep well away from others, particularly children - ideally 2 metres/6 feet away and hope that they don't cough/sneeze in his direction.

He needs to wash his hands frequently and avoid touching his eyes, nose, mouth unless he has just washed his hands. He should carry an alcohol based hand gel in his pocket and use it when he can't otherwise wash his hands.

Keep everything regularly touched in the home clean, particularly after visitors. Wash door handles, light switches, etc.

Absolutely no cleaning up after pets and wash hands immediately after any contact with them.

Immediately clean and disinfect any skin cuts and abrasions.

Shower daily and look carefully for any signs of skin infections that are worsening.

Follow the diet recommendations I previously referenced. It may be that his nausea is due to something he is eating where he can no longer manage the higher bacterial count that doesn't botherhealthy people.

Keep an eye on his temperature - does it show any peaks during the day that indicate he is fighting infections?

Look for another specialist, because your husband should have had his extreme fatigue investigated, been given this basic information on living a neutropenic lifestyle and be more carefully monitored than 6 monthly blood tests. I was initially checked monthly.

I suspect as in my case, that your husband's CLL/SLL has infiltrated his bone marrow to such an extent that it can no longer make enough neutrophils and red blood cells. Those that are made may be removed earlier than necessary by his spleen if it is enlarged (which a CT - scan will show, but it should also be easily determined by an abdominal examination).

Don't be surprised if your husband's current specialist doesn't consider treatment necessary and that's confirmed by a second opinion. I've been in watch and wait for over 8 years following a similar diagnosis situation to your husband. Even severe neutropenia is not a trigger for starting treatment, though it should improve from treatment (which incidentally generally makes it worse initially). You'll just have to adjust to a lifestyle where avoiding the risk of infection becomes a primary focus.

Neil

[Kmiller in reply to AussieNeil]

I was in a similar situation and agree with all of the advise above. I am having IVIG treatments now to help with my immune system and that helps a great deal in fighting off infections. Is this a possibility for your husband? Watch for sepsis as well. Praying for healing.

[Hidden in reply to Kmiller]

Thank you Kmiller. Good luck with your healing

[Ellieoak in reply to AussieNeil]

Neil says exactly what I was going to say. No raw foods.

[ap64]

don't know if this helps but because I'm pretty subject to infections I have taken to having a good supply of disinfectant wipes both in my car and in the house. It's just helps to quickly swipe a surface or my hands if there might be a source of infection about such as a person who has recently coughed or something like that. I have a container of wipes in the car and use it immediately on entering the car after I've gone shopping. You never know if the store clerk who touched your credit card has had a germ or the doorhandle you touched on the way out has been touched by an infected person. in Canada in the winter people always have colds.

[Hidden in reply to ap64]

I took your advice ap64 and I have picked up some hand sanitizer for the ehicles and stuff for the house although I do wipe our surfaces in the house with javex and I use a bit in our dishwater every once in awhile 🙂

[Hidden]

Wow Thanks everyone for all your advice. My hubby has read them and we have a copy of the neutrapenic diet. He has already stopped eating activiia yogurt....and will follow the diet. He does not eat too much as he is not overly hungry.

He has a CT scan scheduled next week and I have talked to him about a second opinion. He is annoyed with his disease and his tiredness. Oh and me nagging him 😊

He is so dang stubborn I have no choice!

I love this site and I am happy that I found it! All of you I wish each and everyone of you positive thoughts and luck in coping and fighting this cancer ❤️