Dad recently diagnosed - waiting and anxious

[chris]

Hi Nyanko

Good luck with that. They are in a difficult position regarding patient confidentiality but hopefully, you can get some more information.

Oh, I so sympathise with your Dad. We take for granted these so-called small things in life - but eating your own food , enjoying it and sleeping in your own bed are so important. When my MDS kicked off - eating and sleeping became my main focus as I could do neither! And, of course, I always think it's arguable about the risk of infection at home versus the risk in a germy hospital with other infected patients and medical staff as potential carriers!!

I suppose any drug treatment can be called chemotherapy and I've noticed there is a reluctance to talk about Vidaza in this way, in the same way as there is debate over calling MDS a cancer. It's not just semantics though as we may not get the services we need if MDS is still an undefined rare disease.

best wishes

Chris

[Nyanko]

Hi all

Just to update, I am speaking to the haemotologist tomorrow, but I've already gathered from Dad a lot of what I expect to hear.

His illness has officially progressed to AML and they are now looking to start proper chemo on Monday. This will entail a 5-6 week hospital stay. Dad is heartbroken, as he will not get to go back home before his treatment starts, since his neutrophils are near zero and they also cannot guarantee him a bed if he is discharged and comes back again. Nothing I say can console him at this point. His beloved pet cat is also ailing and I'm very much afraid we'll have to make the decision to have her put to sleep while he's in hospital. It sounds trivial in the grand scheme of things, but as any animal lover will tell you, it will have a devastating effect on him - which he really doesn't need anytime soon.

I wouldn't wish on anyone the journey Dad and my family have been on this last few months. It's been, frankly, brutal, and it's only getting worse

[chris]

Dear Nyanko

I was so sorry to hear this bad news about your Dad's progression to AML. It all seems to have happened so quickly and it has been very upsetting for you not be able to find out what has been going on. I do hope that he tolerates the chemo well and that it works for him. Timothy Spall, the actor, had AML (and who knows whether he might have had undiagnosed MDS beforehand!) and loads of chemo and has been in remission for a number of years, so good things do happen.

Sad about your Dad's cat too as he really doesn't need to have that additional stress and worry to deal with. No wonder he is unconsolable and that is hard on you and your Mum as well. I also wondered about Macmillan nurses as they may be able to visit and offer a listening ear and some comfort and reasssurance?

I'm sure you will be able to get a better picture when you talk to your Dad's haematologist today and I hope it helps.

Take care

Chris

[Jayne]

Hi Nyanko

I just wanted to say I am sooooooo sorry to hear about your Dad.

I think he might be following the same treatment as me. 10 days of cytarabine and 3 days of daunorubicn (dont know how to spell, sorry!!), if he is he will have the daunorubicin once a day on days 1 3 and 5 and it turns your wee a reddy/orange (takes an hour through your line), and the cytarbine daily at 12 hour intervals (just a push through your line). If he is on the same course as me just think of the success it has been for me, and I really didnt feel too bad through it, although he must take every precaution not to get an infection!

Just a thought, is he having a hickmann line fitted? They do save a lot of hassle and stop you feeling like a pin cushion but they are not the most attractive things to have!

I can also understand how he feels about his cat, I have had pets in the past, my dalmation dog that I grew up with was supposed to come to my wedding and died 6 weeks before, it was soooo heartbreaking. Everything is just so sad for your Dad.

Anyway, sending you loads and loads of hugs and positive vibes. If he is following the same treatment as me feel free to ask me any questions, and of course you have been reading my blog so you know a bit.

It's a horrible time you are all going through, I am glad you have found this forum.

Love Jayne xxx

[Nyanko]

Hi everyone

I know now that Dad has AML he's not officially a member of the MDS club anymore, but since many of you have been following our story, I thought you might be interested in occasional updates.

Dad had his Hickman fitted and started chemo last Tuesday - a different regimen to most that I've seen, consisting of 5 days mitoxantrone and 4 days cytarabine, but overlapping, so the whole course was finished on Saturday. So far he's pretty much had no side effects from the chemo apart from a slightly dicky tummy and no appetite on some days. They even let him home for the afternoon on Sunday and he had a pub lunch! Astonishingly, his spirits have been much better since he started the chemo - maybe because he's finally getting treatment instead of just supportive care.

Overall everything is still worryingly uncertain - I know the chances of achieving and maintaining a complete remission with MDS-transformed monosomy 7 AML are small, but they are still there, and all we can do is keep our fingers crossed. Dad has now been HLA tested, so the search for a marrow donor is finally underway, should he achieve that elusive remission...

[Jayne]

Hi Nyanko
I came onto the forums this morning to look for an update on your Dad and there wasn't one and I'm just about to go to bed and thought I would check again. I must have known you were going to post, lol!

I'm so pleased and relieved that your Dad is doing well and his treatment has started and the chemo is now finished! Does he just have 1 round of chemo? I think everyone gets a dicky tummy on chemo, I had one for about 6 days but it started to clear up yesterday and now I'm back on the movicol (for constipation, one extreme to the other!).

It's amazing how well we can tolerate chemo these days, the antisickness drugs are brilliant. I can't remember how old/young your Dad is?

Please, please do keep us informed how your Dad is, I am genuinely concerned for him and would like to know how he is. I would also like to know that you are ok too.

Take care and lots of love
Jayne xxx

[chris]

Dear Nyanko

Thank you so much for updating us and please continue to do so if you feel you can. It's so hard when people come onto the Forum, when we have got involved in their experiences and then they don't post any more. As Jayne says, we do tend to be thinking about people and wondering how they are and how their family and friends are coping with everything.

I can see why your Dad would feel better about actually undergoing treatment rather than feeling very hopeless about it all and maybe it has also taken away some of the symptoms? Great that he enjoyed a pub lunch.

As you say, the future may be uncertain but we are all wishing him the best outcomes.

Take care of yourself, Nyanko. You've been a wonderful support to your parents through these difficult months. Make sure you get support for yourself, too.

Best wishes

Chris

[janetstanford]

Hello All
i am pleased to hear that things are moving along your dad knows what is wrong what they are going to do and what they have to do and more than anything ...he has hope
glad to hear he is coping well i would not worry about the stomach upset as jayne says the anti sickness tablets are great when i had my chemo i had no issues other than my thoughts when taking it and being so tired i used to sleep 16 hours a day for the first 3 months ....but as they say rest helps the healing process and is certainly good for you ...i remember the day i took my last chemo tablets i went off to sainsburys came back and slept for hours ...the nurse thought i was barmy and did not know how i had managed it but you know women when it comes to shopping

please keep us updated and dont leave because as you know MDS can develope to other illness and chris is right as she says you miss people when they do not post and leave the site you do think of them and with me i have been told i have AA final diagnosis but im glad i can still come on the site and chat with with people who do understand
so sure we will hear from you soon..and Jayne its been a long week and i shall answer the vit post soon and your others ..been a long week
all Take care Janet

[Nyanko]

Hi everyone

Another update...

Dad is currently at home, having finally been discharged last Friday. His blood counts are still pretty poor - hg holding fairly steady at 10, with a couple of units transfused each week... platelets staying in the low teens (although yesterday's was 20, so maybe they are very slowly coming up)... but even with growth factor shots each day, the neutrophils still hover around 0.1 - 0.2. So, still very neutropenic. I'm pleased to report he's taking care with diet and hygiene at the moment, mainly because he doesn't want to get re-admitted early!

Overall there is good and bad... good things are the ease with which he's got through the chemo (for the last three or four weeks of his stay, he was going for a walk every day to buy the paper and a bacon roll from the on-site Greggs!), and the doctors have been astonished at what good shape he's in physically right now. His hair is thinning, which he's disappointed about - he'd reached 64 with a full head of it - but, we were all expecting that. The doctors also said his BMB from a couple of weeks ago showed a reduction in cancer cells, which is great.

Bad stuff: having had a few good weeks, he's gone into a depressive mood again. Mostly because he's having to go into the hospital most days for blood tests and the odd transfusion, so he doesn't feel like he's having a proper break even though he's at home. He had another BMB today, as they are not sure of the quaility of the first one (with his fibrosis, they struggle to get decent samples from him.) There is an appointment scheduled with Dr Pessimist next Wednesday for discussing what the next treatment will be, and Dad has been told to bring a family member. That will be me, and I'm worried. I dread Dr P telling Dad he thinks there's no point going through another round of chemo, and spelling out to him how little time he might have left on supportive care alone. Dad still doesn't really know how dire the situation could potentially be. But, I am not willing to give up on treatments yet. I gather that many people do two rounds of induction, and there is always Vidaza to try if there's no remission after that, surely?

(By the way, Dad's cat is still with us - she has an untreatable tumour on her liver, so it might not be for long - that's another thing I've not told the parents. It'll have to come out if she starts to deteriorate, but she's fine for now and I figure they don't need the additional stress )

[Sarah Reakes]

Hi Nyanko,

It was good to hear from you and we appreciate the update on your Dad. As you say it's a bit of a mixed bag of outcomes and I'm sorry that the old depression is back but I guess that's pretty inevitable when his life has been turned upside down by his illness with no end in sight.

I really do hope that your Dad's appointment with the Consultant isn't too pessimistic and that they're not giving up on him because that really is a difficult pill to swallow. The only thing we have is the hope and belief that the medical experts can give us more time and quality of life with the amazing amount of drugs and trials that are coming on stream all the time.

You can rest assured that we are all thinking of you and we truly do wish your Dad, your Mum and YOU all the luck in the world for a positive outcome.

You are very much in my thoughts and prayers.

Sarah x