Hodgkin lymphoma

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Neutrophil count 0.3 and doctor signed me off to have ABVD

Kaito
Posted by

Hi,

My neutrophil count has come back at 0.3 this week and my consultant has signed me off to have the ABVD as normal. 

I’m just having the final saline flush through as I type. The nurse has said I need to be extra careful. 

Just wondering if anyone else has had ABVD with a low count and how they found it afterwards. 

Any tips for being “extra careful” as my nurse suggested?

thanks

kairen 

Thehighlander
Posted by

Hi Kairen I was waiting to see if any of the HL folks would come along as I did not have ABVD but its clear that your team must be happy to move forward with treatment having balanced the challenges of your Neutrophil Count and holding back your treatment. You may find that you will have to have blood transfusions during these low count times.

Following my second Stem Cell Transplant my counts were well below 1.0 for months so had also to be very very carful.

Infection Control - we were ultra carful with serialisation of surfaces, handles, hand washing, no shared towels - even not hand washing dishes but everything went in the dishwasher to get a good clean.

We monitored the folks that I came in contact with. I never went out where there were crowds that I could not check how well everyone was, or at least able to stay a good distance away from folks. Going to hospital can be a big problem so I put a scarf over my face with a handkerchief coated with vic or Olbas over my mouth and nose. We never sat in the waiting room crowds, but my Heamatology Clinic has a clean waiting room only used by at risk patients. When using the lifts we would insist that none came into the lift with us........ must have thought I had some contagious illnes.

We had a blanket ban on anyone visiting the house that had any illness. The four granddaughter temperature was checked and we even informed the school to pass on information about any cottages illness in the school.

Food can be a problem so sticking to a pregnant mum's diet.

This is some information I received from my dietician.

Food when on Chemo

Part of the way chemotherapy works is it kills fast growing cells. This includes not only the cancer cells, but your white blood cells (neutrophils) that fight infections. There is some debate about whether patients need to change their diet to prevent infections when having chemo. Some doctors and dieticians believe it’s very important to follow strict dietary guidelines. Others give less strict advice. This is because we don’t have evidence behind this and we are using professional opinion. This can be confusing. Food safety and hygiene are the most important.

Some tips for you:

Shop smart – Check foods are in date.

Make sure you get the chilled and frozen foods home quickly.

Prepare and clean up - Clean hands and the kitchen.

Use separate chopping boards for raw and ready to eat foods.

Prevent cross-contamination - Separate raw meats, chicken, seafood from ready to eat foods in the fridge.

Cook food properly, piping hot throughout.

Eat out in clean places and make sure your food is hot.

Don't have carry out food as you can not control it

Eat

Meat, chicken and fish cooked through

Pasteurised milk

Cooked eggs with a firm yolk

Washed fresh or cooked fruit and vegetables

Hard cheese or soft cheese made from pasteurised milk

Vacuum-packs meat, ham.

Re-heat cold rice till it is steaming all the way through.

Some foods have a higher risk of becoming tainted with bacteria. Here are some foods you might want to avoid.

Avoid

Raw or undercooked meat, chicken, fish and no shellfish

Unpasteurised or raw milk

Raw or undercooked eggs

Unwashed fresh fruit and vegetables

Soft cheeses made from unpasteurised milk

Uncovered deli meats

Cold rice

To limit your risk of infection from food:

  • Cooking food (eggs/meat/fish) thoroughly and having good hand hygiene.
  • Avoid cross-contamination between cooked and raw foods
  • Wash fruit and vegetables well
  • Avoid unpasteurised cheeses and milk
  • Choose pasteurised milk, yoghurts and cheese
  • Ensure that food is in date
  • If having cooked/cured meat, opt to vacuum packed and not from the deli counter.

 

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Kaito
Posted by

Hi Mike

Thanks for your reply. Since day one my consultant has said that for HL and the ABVD treatment, even with a very low neutrophil count they would still go ahead with the next treatment. Only if I had a temperature would they postpone. 

Interested to know if this is what other HL people on ABVD are also told by their consultants. 

I was surprised that mine was as low as 0.3 this week before treatment. I only found out today as when I had my blood test and saw my consultant pre-chemo this week, the bloods were late coming back. 

I’ve been following most of this food advice anyway from the beginning. 

I find it more difficult with some of the contact stuff as I’m a single mum with two kids aged 9 and 7. So there’s times I need to take them places. I like the sound of the scarf/handkerchief idea. Wondering if I should do similar or perhaps order from amazon some of those mask things?

I think I’ll need to get the kids to up their hygiene a little; my daughters been coughing a bit so I may have to ask her to keep a little distance. I hate saying that when they want lots of cuddles but I need to balance their comfort with my safety.

It would be good to hear any tips from others please

thanks

Kairen 

moomy
Posted by

Hi Karen,

loads and loads and loads of common sense needed here; I know your wee family want cuddles, but remember to wash hands afterwards and keep face and mouth away when you’re cuddling, explain that Mummy has to be extra specially careful at the moment. 

I’m much more cautious with rice than I used to be as I was once caught, being sold a commercial rice salad with other salad foods which obviously was poorly chilled after being cooked. Bacillus Cereus (which is what rice can carry) is not destroyed by heat unlike most bugs in foods, and can really be pretty awful food-poisoning-wise, I had dreadful D&V for a good 32 hours. 

Thjnk carefully about salad stuff too, anything you can wash and then peel is ok (so apples, bananas etc but lettuce etc can be dodgy) . Eggs cooked through are ok but anything that you’d normally have on the raw side, steak, blue cheeses, and so on, avoid! 

Hope you stay bug free....

hugs xxx

Moomy

Kaito
Posted by

Thanks Moomy

I have said to the kids today that we need to be extra careful. So no kisses on lips at the minute. I said even if they don’t feel poorly they may have picked up a bug or virus and not know yet. And I said we can still have cuddles but just need to be careful. 

I already make them wash their hands frequently and I’m always washing mine but will be extra vigilant. 

I’ll be extra careful on the salad for a while too. 

The other food stuff I’ve been really careful with. I’m only eating rice I’ve freshly cooked anyway.

I hope my neutrophil count comes up again in two weeks time. It’s been very up and down and I have already been admitted once for sepsis neutropenia. I don’t want to repeat that.

Thanks for the advice, I’ll lol to be more careful with a few things. Thanks

Kairen x 

Reanswolf
Posted by

I must say my 15 year olds blood test have varied immensely during his treatment, so much so that it is reall hard to interpret them (perhaps us lay people shouldnt!). He has had 2 x OEPA and so far 1 x Copdac treatment, with 3 of the latter to go.

At diagnosis his Hemoglobin HB was 12.3 (this has remained static between 12.2 and 12.7).

His WBC was 9.6 at diagnosis, went as low as 6.7, then for last 2 weeks up to around 14, then this week 6.3.

Linked to WBC apparently are Neutrophils, at diagnosis 6.1, down as low as 0.2 and 0.3, then corresponding with high WBC they went up to 6.8 then 9.1, then now down to 3.0 this week.

Platelets at dignosis were 271, then 323, then 395, 425, then 311 this week.

I think high Neutrophils, WBC, and platelets seem interlinked, but no idea why they shot up for a couple of weeks as he wasn't ill.

I've literally given up trying to interpret these now. There can be so many reasons.

Nick
Thehighlander
Posted by

Nick, good to hear that are ticking over and that you have given up interpreting blood counts....... they honestly do go all over the shop and damed if the medics can find a reason at times..... little chance for us mortals to figure it out.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Reanswolf
Posted by

Thanks Mike.

I agree they have frightened me to death at times, with what the increases or decreases are possibly meant to indicate in terms of illness.

At the end of the day, bodies receiving treatment are under quite a lot of duress so its no surprise they are al lover the place at times.

Nick