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 haven’t recovered. x
Oh @Help, I’m 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. It’s good the haematology team are keeping a close eye on things - even when it feels like everything is on hold, they’re clearly watching carefully.
Hi @Rosevin4, I think it’s understandable and very familiar feeling to all of us who’ve had to navigate similar overloads of health information. There’s so much data coming at you all at once and it doesn’t 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 wasn’t 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 it’s 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 that’s interesting isn’t 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 don’t 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 he’ll 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 it’s 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 doesn’t have the energy she had before, which she finds frustrating. She also doesn’t ever really have any appetite but she forces herself to eat little and often. Apart from that she isn’t finding it too bad, just doesn’t like having to go into the hospital every day but once the seven days of Aza are over then she doesn’t have that extra stress. I am sure if they were worried about your Dad’s 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 news
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 it’s just what I have read.
Sorry to hear your Dad’s next chemotherapy has been delayed due to his counts being low.
I can say from my own experience that it’s 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 it’s 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 mum’s 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 won’t have long to wait. It is definitely a rollercoaster!
Hope you manage to have a somewhat calm weekend and your Dad has an enjoyable Father’s Day xx
How’s your Mum’s fartigue, @Rosevin4? I hope cycle 2 is going okay?
@Help, is your Dad starting his cycle this week? If so, I hope if goes okay.
Please do remember that our SUpport Line (staffed by our blood cancer nurses) is here for you all - it’s not just for those going through treatment, but for their loved ones too. You can call on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
Cycle 2 is going well, she has finished the 7 days of injections so about 13 days of the tablets left until the end of the cycle. She has had a lot less energy and she hasn’t really felt like eating but has been having smoothies instead. Yesterday she actually started to feel a lot better so hopefully that continues. We have a blood test at the hospital today to see how her levels are doing.
So sorry for the delay in getting back to you. I have felt somewhat depleted!
Dad had just done another 2 week stink in hospital for vasculitis this time. He was quite unwell. He has had biopsies to find out why he had it, whether it was a reaction to medication or the Acute myeloid leukaemia ('AML') itself causing it. It is clearing up now tho worn steroid cream, and he is due to start chemo 2 on Monday if his levels are ok. Keeping everything crossed!! Strangely, he does seem quite well right now, they best he has been since this all started tbh, so who knows.
@Rosevin4 how did your mums 2nd cycle go? Is she on her 3rd now already? Has she been managing to eat anymore? How is her fatigue?
how are you doing? You must be well into the third trimester now? How have you been managing with the heat? It was a v hot year when I had my 2nd daughter I remember it well so feel for you. Sorry I have not messaged much, I have been thinking of you and your mum tho.
Hi lovely. So great to hear from you and despite the setbacks I am so pleased that your Dad is feeling the best he has since diagnosis. Honestly don’t feel any pressure to reply, only when you want to. Let me know when you get the biopsy results.
My Mum has just finished her 2nd cycle of 5 days Aza/28 days ven. She will be neutropenic now so cycle 3 will start once her neutrophils go back up. Strangely her platelets and RBC haven’t been affected by the chemo. Thankfully halfway through the cycle her energy levels and appetite seem to return so it is good that there is a pattern.
Another twist in my dramatic life. My waters broke at 30 weeks + 6 days so I have been in and out of hospital as an inpatient. It is called PPROM and I have never heard of it before but it all came out of nowhere as have had such a straightforward pregnancy before this. Most people give birth within the week but I have thankfully surpassed that and am currently 32 weeks + 2 days. It is a bit scary that I can give birth at any time but just trying to focus on the fact that every day I get through is 24 hours more growing time for the baby. It is my daughter’s 2nd Birthday tomorrow so we are having a party today, not that I will really be able to do much!
Oh my goodness! Gosh I am speechless. I can only imagine the stress and all the emotion you have right now. Life is so very busy with a 2 year old and a pregnancy without added stressors and so I really feel for you and send you my love. You are doing great, just take one day or one hour at a time and try to be as kind to yourself as possible in every way. Sending you the biggest hug!! Happy birthday to your daughter 2 is the cutest age .
Hello @Help and @Rosevin4, just catching up after being at a conference all last week.
@Help, I’m sorry to hear your Dad was unwell and was in hospital again - did the biopsies shed any light on what was causing it? I hope his chemo went okay yesterday, and that he continues to be quite well. How are you doing managing it all, are you okay?
@Rosevin4 oh my goodness, what an update! First, glad to hear that your Mum is doing okay and that you’ve started to notice the pattern she’s settling into (I find it makes it easier to manage if you can roughly predict).
Secondly, I’m SO sorry you’re dealing with PPROM on top of everything right now! Amazing to have continued past 32 weeks, well done. Not what you needed on top of what’s going on with your Mum, and parenting a (now!) 2 year old (happy birthday to her, I loved that age - my daughter is 4 now and I sometimes miss that stage).
Please, both of you, do keep us up to date with how it’s all going and how you are both doing - you’ve each got a lot on your shoulders.
Thanks so much for all your well wishes! I am miraculously still pregnant, and am currently 33 weeks + 3 so baby will be in a much better place than when my waters went.
My Mum is doing well. She has been allowed to start the GCSF injections now to boost her neutrophils so hopefully that should give her some periods where she isn’t neutropenic. She is supposed to start cycle 3 on Thursday but neutrophils are still not recovered so that will probably be delayed until next week.
She had another BMB after second cycle which confirms she is now MRD negative as well as being in remission. As far as I am aware that means that they can’t detect any leukemic cells, even when using the most sensitive technology they have. The plan is to still do Aza / Ven indefinitely as my Mum doesn’t want a Stem cell transplant.
@Help How is everything going with you and your Dad?
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 it’s a worry something might happen again, which of course it could. Just have to take each day, as hard as it is.
2 is the cutest age 
.