Thank you for your message. Dad saw a podiatrist today who thinks he may have a bone infection in his toe from when he had cellulitis as few weeks back. He is now on different antibiotics for 2 weeks and has an x-ray on thur. The haematologist is a bit worried as it will be another set back. All chemo is halted atm from last week and the surgery. They did plan to start cycle two as usual but we will have to see now it all seems endless and hopeless, but we plod on.
So sorry to hear this. Your Dad has had such a tough time so far and my heart really goes out to him and the rest of your family. I wish he could just have a break from all this stress! You must all be such a great support network for him.
Everything is going okay, we got some more results back yesterday but honestly despite all my research I find them all very confusing and I left with my head spinning a bit. Trying to make sense of all the different numbers and tests done is a lot. I think I just have to accept she is in morphological remission and it was a good response to cycle 1. Her platelets have recovered (they went from 38 to 295 in 5 days!) and her RBC is fine but neutrophils still very low. They are planning to start cycle 2 on Monday (another 28 day cycle) but have no clue if they will just proceed regardless even if neutrophils havenât recovered. x
Oh @Help, Iâm sorry to hear that. On top of everything else feels so unfair, and I understand why it might feel endless right now.
I hope the x-ray tomorrow gives them a clearer picture, and that the new antibiotics do their job quickly. Itâs good the haematology team are keeping a close eye on things - even when it feels like everything is on hold, theyâre clearly watching carefully.
Hi @Rosevin4, I think itâs understandable and very familiar feeling to all of us whoâve had to navigate similar overloads of health information. Thereâs so much data coming at you all at once and it doesnât always make sense, even when the overall picture is positive.
If it would help to talk through any of it, our blood cancer nurses are there for exactly this kind of thing - helping make sense of results, treatment plans, all of it. You can call them on 0808 2080 888 (option 1), or pop them an email at support@bloodcancer.org.uk if that feels easier.
Fingers crossed for cycle 2 starting on Monday - hopefully the neutrophils will have recovered enough by then. Wishing your mum all the best for the next round.
cycle 2 should start Monday next week as planned so fingers crossed. The X-ray report wasnât back. She did look at it herself but thought it was inconclusive. But haematology said cycle 2 can start regardless so . His groin wound seems to be doing ok, so hopefully that continues to get better. Feel a bit scared about the chemo starting again. Dad has been ever so slightly better of late, and we seem to have had a less dramatic and traumatic run for the last week so itâs a worry something might happen again, which of course it could. Just have to take each day, as hard as it is.
how is your mum @Rosevin4? Sorry for the delay, I have felt a bit depleted tbh, but have been thinking of you. Did she start cycle 2 this week? I hope all is going well if so.
How have you been feeling? How many weeks are you now? X
No worries at all about the delay, honestly, just write back whenever you feel like you need to talk to someone. Glad your Dad has been doing okay recently, fingers crossed all goes well with round two. Did he ever get to complete cycle 1 or did they do a shorter cycle because of the infection? Totally normal to feel depleted, it is all so much, and your Dad has had so many setbacks. Hopefully it will all be worth it when you get the results back from the BMB after cycle 2.
My Mum started cycle 2 yesterday. Her neutrophils are still around 0.9 but they were 0.1 a week ago so they were happy to start it as long as they are above 0.5. Her RBC is fine and her platelets are very high (in the 500s) but they are starting to drop back to a normal place now. Since she had 23 platelets at diagnosis it is quite a difference but apparently this happens sometimes when the bone marrow goes into overdrive trying to repair itself. This is another 28 day cycle, hopefully they can reduce the Ven length in the future so she can have more time to recover her immune system.
Oh wow thatâs interesting isnât it about her platelets! I guess everyone is slightly different too. I hope she is getting on ok with cycle 2 so far. No one has mentioned anything about waiting to see what dads levels are doing before starting cycle 2. He is having a blood test Friday specifically for chemo on Monday so maybe if that comes back v low they donât proceed. Not sure, but no one has said.
He managed to get a full round of aza in, but only about 10 days of Venetoclax. So maybe this round heâll be able to do a full round who knows. He is still quite tired and over does it a lot of the time. I suppose itâs hard to go from being active to not being able to do much.
but yes, hopefully they can both go to shorter cycles in the near future and feel a bit better in general.
Yeah I can imagine it is really tough for him. The main side effect my Mum has is fatigue, she just doesnât have the energy she had before, which she finds frustrating. She also doesnât ever really have any appetite but she forces herself to eat little and often. Apart from that she isnât finding it too bad, just doesnât like having to go into the hospital every day but once the seven days of Aza are over then she doesnât have that extra stress. I am sure if they were worried about your Dadâs bloods he would be having more tests so I would take that as a good sign. I think it sounds like his immune system is coping well anyway. Hopefully he will get a BMB at the end of cycle 2, I am sure you will receive good newsâ
His next cycled is delayed for a week as his white blood cell is 2 and neutrophils 0. Something so they want to wait. He is a bit upset but I did say it is quite normal for this to happen. No one has said that to us at the hospital itâs just what I have read.
Sorry to hear your Dadâs next chemotherapy has been delayed due to his counts being low.
I can say from my own experience that itâs very common for this to happen. I saw the same for others who I got to know at the Haematology Clinic I go to.
If you share this with your Dad it will hopefully reassure him that itâs all part of the journey
So sorry to hear that. I can only echo what @DuncanB said about this being the norm. Ven is notorious for causing neutropenia. My mumâs 2nd cycle was also delayed due to low neutrophils. I think they got to their lowest point a week after the Ven ended and then took another week to rebuild but they still never made it above 1. They settled with starting cycle two as long as the neutrophils were over 0.5. Hopefully they make the same decision for your Dad so he wonât have long to wait. It is definitely a rollercoaster!
Hope you manage to have a somewhat calm weekend and your Dad has an enjoyable Fatherâs Day xx
it all seems endless and hopeless, but we plod on.
. His groin wound seems to be doing ok, so hopefully that continues to get better. Feel a bit scared about the chemo starting again. Dad has been ever so slightly better of late, and we seem to have had a less dramatic and traumatic run for the last week so itâs a worry something might happen again, which of course it could. Just have to take each day, as hard as it is.