Neutropenic after first round of ABVD for HL

Evening. I’ve had my first round of chemo (Day 1 and Day 15) for Hodgkins Lymphoma (Stage 2) and am currently in hospital as I was neutropenic and developed a temperature of 38.4 on Sunday night. I was due to start my next round of chemo tomorrow but this has been postponed. Currently having to have IV antibiotics for 5 days. I am also having G-CSF injections to increase my white blood cells production. I had 3 days of injections after my last treatment on my consultant’s recommendations. I am not sure if I had an infection as my blood cultures results seem okay but to be safe the doctors are giving me the full 5 days in hospital to administer the antibiotics. I’ve got 5 more rounds of chemo to go so I’m hoping this is just a blip. My consultant says he will increase my G-CSF to 5 injections after each treatment. The injectons seem to be working as my Neutrophils have gone from 0.3 to 2.3. I have been careful with my diet but will definitely keep an eye on what o eat going forward. Are there any foods I can eat to boost my immunity? Is the long term use of G-CSF injections okay? I really don’t want to end up back in hospital and keep delaying my chemo. Thank all

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Hi @Konstance it sounds a scary time of not knowing for you and I am sorry that I have no answers for you.
As for foods to boost our immunities, when I was first diagnosed in 2003 I was told no, but I do not know if the thinking has changed over the years.
However I suppose I am eating a higher amount of veg and salad and perhaps less red meat over the years.
As for your medical questions perhaps really talk to your consultant with your fears, thoughts, feelings and questions and have you got a CNS (Clinical Nurse Specialist) you can talk to.
I hope others can share their experiences.
I will copy your post to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK @LauranBloodCancerUK @Heidi_BloodCancerUK in case they can add anything.
Please look after yourself and be kind to yourself and keep posting

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Hello @Konstance,
Thank you for posting on the forum. I am sorry to hear that you have had to stay in hospital, I hope you’re starting to feel better. I am sure you’re being well monitored now and having the right support, it sounds like you really needed to stay in for the antibiotics.
I hope that the Consultants have reassured you that the delay in having your next cycle won’t be detrimental to your long term treatment plan or outcomes, although, I am sure you just want to get through it all smoothly and as soon as you can.
With regards to your diet and certain foods for immunity; the key is to eat well and don’t try to diet or dramatically change your normal foods. Fruit, vegetables, plenty of water etc - are always beneficial. There is such a thing as a Neutropenic diet, but that is about foods to avoid if you are neutropenic; soft cheeses, sea food etc. Your Doctor or CNS (or the ward nurses) should be able to give you a leaflet or print out of this whilst you are on the ward, please do ask for it (or message me back and I can send you a link). You could ask to see a dietician whilst you are on the ward, just for advice and extra support. The nurses can refer you.
Going forward with your next cycles of treatment, you maybe given GCSF for a couple of days just as a precautionary measure, when the medical team know your counts are likely to drop. You shouldn’t need it on a daily basis between cycles. It’s quite common for people to need GCSF to keep their counts up. Just be aware of any bone pain and let your Doctors or team know if you experience this.
Yes, keep your fingers crossed for it just being a blip! Next cycle everyone will be more aware that you have previously been neutropenic and will be prepared to monitor you and action any blood counts early on.
I hope the rest of your treatment goes more smoothly and you manage to stay out of hospital.
Take care of yourself and keep asking for support from your team, that’s what they are there for.
Please keep in touch and let us know how you are getting on!
Best wishes.
Heidi.

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Good Morning @Konstance,
How are you feeling? Did you manage to go home over the weekend?
I hope you had a chance to discuss a few of your queries with your medical team.
Have you got a date for your next chemo cycle?
If you have anymore questions or need support please do let us know.
You are always welcome to call the support line and speak to one of us here at BCUK.
[Blood cancer information and support by phone and email | Blood Cancer UK] Blood cancer information and support by phone and email | Blood Cancer UK

Hope you have a good week.
Best Wishes,
Heidi.

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Hi Konstance, it’s all a bit scary isn’t it?! But it’s amazing how quickly you normalise it all. I’ve been on G-CSF White Blood Cell boosting injections off and on for 3 years ( it’s a long and tedious story I won’t bore you with!). No side or ill effects at all and they really do help minimise the time you are Neutropenic, and hence the time you spend at increased risk of infection ( which, as you are experiencing are a pain in the bum as they waste time and energy!).
Of course, I only take G-CSF when needed - ie when Neutropenic.
So, is summary, no issues with G-CSF from my experience
Good luck with the treatment :blush:

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Evening. I returned home on Friday evening and it was lovely to sleep in my own bed. Thanks for all your responses. I hope that it was just a blip and I can get back to my chemotherapy routine. I’m having a port fitted tomorrow on the recommendation of my consultant and chemo nurses, as my veins aren’t great. Next round of chemotherapy is set for the 18th August. I feel like I’ve still got a mountain to climb.

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Hi @Konstance yes, there is nothing like your own home and bed.
Please let us know about your port fitting and also your chemo when it starts on the 18th.
Look after yourself

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Hi @Konstance I have been thinking about you, how are you doing now.
Is you next round of chemo still on for tomorrow, let us know how you get on.
Each step on your mountain is progress and slow and steady wins the race.
Take lots of care of yourself

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Hello @Konstance
Thank you for updating us.
Do you now have a port? Nurses love ports - especially if the patient is very difficult to cannulate. The feeling of having to repeatedly try and fail at putting a line in, is awful. You feel so guilty for what you are putting the patient through.
Thinking of you today and your next cycle of Chemo - I hope it goes okay for you.
I’m sure you have been told, but have a low threshold for calling your Haematology team if you feel unwell after this cycle. I’m sure you’ll sail through it though!
Keep us posted. Enjoy the weekend.
Best wishes,
Heidi.

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Thanks for your messages. I have my port fitted and the nurse used it today with great success, it was nice to be hands free and no searching for a viable vein. Feeling okay. Going to have GCSF injections for 3 days after treatment to help with my white blood cells count. Having bloods done in a week to make sure everything is on track. 1/4 way now, slow and steady. All the best x

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Good luck with the treatment @Konstance . We’ll thinking of you. Human beings are very resilient and you’ll find inner strength that you didn’t know you had like I did when I had my treatment. Keep us updated on your progress.

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I have been thinking of you, @Konstance how are you doing now?
Look after yourself

Evening. I’m doing okay. I had my interim PET scan (after 2 cycles) and it is all good news, and my consultant said I am in complete metabolic response to the chemothearpy. I can drop the ‘B’ drug and carry on cycle 3 to 6, with AVD. I’m so grateful everything is progressing well. My neuts are still low so have to continue with to take G-CSF for 4 days after each session. Seems to improve them but still low. Otherwise all looking good.n

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Great @Konstance I am glad that all is looking good.
Look after yourself

It’s great that you’re making progress @Konstance . It’s always nice to feel that the treatment is worthwhile and you are building towards better days. I hope things continue to go well for you and those better days come.

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