Sounds like an exciting trial. Targeted therapies are definitely the way of the future for treating blood cancers.
Rituximab has been a game changer for lymphoma patients and I had it in conjunction with chemo.
Your plan sounds like a good one as you'll still have chemo available as an option if the trial treatment doesn't work for you.
You'll be surprised by how quickly you get into the rhythm of treatment. The scariest part is all of the unknowns before you start. It's been quite different to what I imagined.
I just saw some posts that were from mid January this year that did not come to my inbox.
How are you everyone? Also I am curious to know how Wendy and Garret are doing.
My husband(M)'s chemo has been further postponed. He has phone consultation every 2 months for now. M's been very lucky to have been furloughed. With 7 year old son who needed to stay at home, it was a god send. Scotland sent the letter a bit later than England but we did get it and he has been receiving the letters re. shielding.
M had high fever 3 times so far during the lockdown. He did not have any covid 19 symptoms but the last time he had fever , we went to get covid tested even though we did not think we had it under a GP's advice- just so that we were sure.
It has been interesting to have seen M gets unwell when he had been shielding till the end of July and he is still kind of shielded.
I am now wondering how things would go with the school opening from 12 Aug. As covid 19 seems to attack Hemoglobin, it is worrying for people with blood cancer. I guess we would need to see how this one plays out and weigh our son's social and educational needs, watch M's health and how the pandemic will be dealt with.
I am wondering why I have not seen anybody posting here. Are you all well?
Or would it be that this group has been moved to another forum? I mentioned the quietness to a Macmillan Community person and they said either I start another discussion or join another group which to me would be not such a good idea (HLC being a rare thing but I also do not think spreading this to several discussion groups would not be user friendly).
I think I remember you from messages a few years ago. Hope you're doing well. I thought I was fine, relatively - until sepsis struck in April, so that was two separate weeks in hospital with lots of intravenous antibiotics, a relief to get home even though weak and feeble. then in May it was cladribine chemo - my first since initial treatment way back in 2003. That went well, so each month since then I've been getting stronger and my immune system has been recovering, put simply neutrophiles up from 0.3 in May to a whopping 3.6 last month, well into the normal range.
Glad to see you replying, Frank. Thank you so much for your voice.
Sorry to hear about Sepsis AND Cradribine. And glad to hear you had a leap in recovering since. Fab. That is something particularly when you went through serious stuff one after the other.
Can I ask... so all of your bloods (such as Haemoglobin, RBC,Platelets and Monocytes) are in the normal range?
My husband, M, had rituximab this Feb-Apr as cladribine did not do the job in 2019. Due to Covid, his rituximab was delayed for over 1 year and also in Scotland, we had medical challenges as you need permission within the NHS system for the consultant to administer Rituximab.
By the time it was possible, his bloods were really low. And ever since, his bloods are slowly recovering (and he had one transfusion). He never had a leap like yours. I am personally unsure what our next steps are if rituximab does not do the trick either. His recovery in bloods is at a snail pace and I thought that was normal....
I wish there was some kind of guide on how people recover from HCL in terms of bloods.
I hope others are doing well and hopefully, we hear a bit about how you are getting on.
