Chris has got cancer

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Chris has got cancer Chris' Lymphoma Journey etc moving forward. Battle Stations!

29/07/2025

Chris saw the Oncologist again today for another review and it went well. His neutrophil count is holding after an injection on Thursday last week, and the Oncologist wished him a happy holiday. Next thing on the To Do list is to pack for Bali!

15/07/2025

We had quite an encouraging appointment with the Oncologist this afternoon when we got the bone marrow biopsy results. The Doctor is basically happy with things as they are, and he will continue to monitor things. Chris's Rituximab infusion is going ahead on Thursday.

Chris will need to have an immune system stimulating injection tonight (Filgrastim), and more blood tests to find out how it is working. He will continue to stay off his tablets, and the Dr will continue to monitor his neutrophil count. We will get some more complete results of the bone marrow biopsy in 2 weeks.

Chris's blood cells are still low (green is normal range).
06/07/2025

Chris's blood cells are still low (green is normal range).

17/06/2025

Complete metabolic response (remission)!

Neutrophils are low. Need to understand if it's the chemo that's done that or something else. So will have a bone marrow biopsy next week to do understanding. Still having rutuximab on Thursday.

Options are always ahead eg bio specific treatments or CAR-T. But that may be a later plan.

12/06/2025

Fairly big day today. Chris is having a PET scan this afternoon so we can find out if the treatment he has had so far has been effective. We get the results on Tuesday- that's also going to be a big day!

Chris's neutrophil count is still low (0.9 was the result we got yesterday- for context it should be at least 2). He has had to stay off his chemotherapy tablets, and had to give himself an immunostimulating injection yesterday. On Tuesday we will also find out what this means for his treatment options- whether he can restart the chemo he was having, or we have to switch to something else.

31/05/2025

We just wanted to update you on the latest blood test results- Chris's neutrophils are 3.8! They should be at least 2, so this is very comforting. We will contact the Lymphoma Nurse on Monday to get an idea of what to do next, but for now we are just enjoying the knowledge that Chris is safe.

Thanks everyone for your support and well wishes.

28/05/2025

We're having a bit of stress at the moment- Chris is really immunocompromised. Neutrophils are a type of white blood cell important in the immune system. We got some blood test results back during his last infusion on Thursday last week showing his neutrophil count was 0.6 (it should be at least 2). He halved his chemotherapy tablet dose and had an immunostimulating injection on Thursday, and got some more blood tests on Monday. We got the results back today and his neutrophils are 0.2. He has had to stop his chemotherapy tablets and begin immunostimulating injections at home. He will have some more blood tests on Friday, and he will begin his chemotherapy tablets again once his neutrophil count is above 1.0.

This is quite stressful, as it is unusual to have such a low count outside of hospital. Last time it was this low was a few days after his stem cell transplant, and there was a team of Nurses at the other end of the call bell, and a crash cart outside his door! Chris has to take his temperature four times a day, and if it goes above 38 he has to go to an Emergency Department.

This is quite challenging to deal with, especially with Emily working in Geelong for the rest of the week. We would really appreciate all thoughts, good wishes, prayers, etc that Chris's immunity would increase really quickly, and he would not have to go to hospital.

24/05/2025

Round 5 went ok.

feeling a bit nauseous and tired.

Neutrophils are down at 0.6, so definitely immunocompromised.

Got injected with some Filgrastim to bring those up and also halving the chemo tablets for now.

PET scan will be on Friday 13th!

29/04/2025

Oncologist very happy. Said he couldn't feel anything.

Chris will have a PET scan in mid June, but looks like he's happy for us to go overseas on a holiday as long as we have a return ticket that can be activated immediately in case we have to come back due to a health emergency.

25/04/2025

A long overdue update- Chris had a treatment review and an infusion yesterday (Rituximab). It all went pretty well. The Dr was pretty happy with how Chris is tracking. The infusions are now monthly rather than weekly, which is a great relief. The infusion went pretty smoothly. He has also begun the tablets again (Lenalidamide), and has been having some side effects today (fatigue and a bit of nausea, and a slight temperature for a bit). The public holiday has been really timely for us.

21/03/2025

So, Chris says that he can feel that the lumps are definitely decreasing noticeably in size.

Glad we've got compassionate access. (Lenalidomide is only on PBS for Multiple Myeloma, not Follicular Lymphoma).At thes...
21/03/2025

Glad we've got compassionate access. (Lenalidomide is only on PBS for Multiple Myeloma, not Follicular Lymphoma).

At these prices (and I guess noone actually pays full price?), this works out to

USD$931.11 per 10mg tablet = USD$1862.22 per day = AUD$2953.37 per day. 21 Days every 28 days 21/28 * 365 = $808,485.03 per year.

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