Husband starting Hydroxycarbamide

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chris
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Location: Essex
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Re: Husband starting Hydroxycarbamide

Post by chris » 01 May 2014 18:16

Hi Molly

Guess that's the problem with chemo - it kills all types of cells and cannot be specific. No doubt he will be monitored to see if the counts recover but maybe the dose will then need to be fine-tuned to reduce the excess monocytes but keep everything else in the safe range? Sorry, no personal expereince but do ask Sophie and of course ask questions at each appointment - I know you do!! Your husband sounds as though he is doing great at the moment so hang in there!! Better weather coming so fewer infections around - all good news!

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
MollyP
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Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Husband starting Hydroxycarbamide

Post by MollyP » 05 May 2014 22:21

Thanks Chris
He went and caught a cold, I was very scared, but although he felt awful he said it was no worse than when he had had colds before he was diagnosed so hopefully that means the bloods have recovered. More test tomorrow so we will still find out soon.
We have had a lovely bank holiday weekend and my seedling are all up and looking healthy so I too will be planting soon. Hope your tomatoes are doing well
Love
Molly
Xxxxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Husband starting Hydroxycarbamide

Post by chris » 08 May 2014 13:48

Hi Molly

I do get very anxious about coughs and colds etc and my experience in January with a nasty bacterial upper respiratory infection/laryngitis did make me very aware of the problems that neutropenia can cause as my white cells simply weren't up to it. Having said that, with all the precautions we take, (hand gels, frequent hand-washing, avoiding anybody with a recent/ active infection - this means asking friends to stay away/ cancelling events etc etc, no social kissing (!)). I have stayed pretty clear of coughs and colds and those I have had have not been much worse than pre MDS!

Hope the test results are OK.

We have a forest of tomato plants - all at a critical stage and we are off on holiday in a few days so they will be under the tender loving care of my Mum - aged 86 - in her greenhouse!! Hope they survive!!

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Husband starting Hydroxycarbamide

Post by MollyP » 02 Jul 2014 23:53

So we are yo yo ing with the Monocytes now up slightly at 1.4, the rest of the bloods are in the normal range.
We are expecting two and a half months of watch and wait to be followed by more Hydroxycarbamide later this Autumn.
Hey ho, but my husband is feeling well so we are pleased and hopefully this yo yo ing will work for many years to come.
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Husband starting Hydroxycarbamide

Post by chris » 04 Jul 2014 16:21

Hi Molly

That all sounds good - even those monocytes are much better than they were pre hydroxyurea -and it must feel better for your husband to be off the medication - for a while at least.

We now have over 80 tomato plants on plot and in back garden so hoping there will be no blight this year! In which case there will be a lot of tomato sauces in the freezer this year! Instant pasta meals! Hope yours do well in front garden and that nobody pinches them!!

I am awaiting blood test results done locally as haven't had any tested since Early Feb because of the shingles at last Addenbrooke's appointment and GP now wanting to give me the results by telephone so have to wait another week for an appointment! I am a bit apprehensive as post-shingles I keep getting funny reactons to foods - swollen lips and eyes and a couple of instances of an urticarial rash - all after foods I normally eat. Yesterday I ate some cherries and looked as though I had had cosmetic surgery on my lips!! Very odd but I don't suppose anybody will have an explanation - only advice to take antihistamiines whereas I would like to find the root cause and prevent it happening!!

Take care. Enjoy the lovely weather.

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Husband starting Hydroxycarbamide

Post by MollyP » 10 Jul 2014 19:24

Hi Chris
Yes I am feeling quite relaxed about hubby at the moment and he seems well so it's nice to relax a bit. Just back from a few days away camping with friends on the south coast.
I can sympathise with you and your mouth. I have over past three years suffered with a very sore mouth initially the problem was with an e45 intensive repair lotion.
I have discovered something called BMS, Burning Mouth Syndrone which I think is a generic term for a sore mouth with no known cause.
I also now know more recently I am allergic to the nightshade vegetables, which are potatoes, tomatoes, and capsicum peppers. I am most allergic to Maris Piper potatoes, and can only eat King Edward types, and sparingly, maybe twice a week, so I eat quite a lot of mashed parsnips which I really like. I find I am not too bad with toms and peppers but avoid them if my mouth is already sore.
I had never thought about having an antihistamine when it flares up so I will try that next time it happens.

I hope you find some relief soon and your blood results come back good.
Take care
Love
Molly
Xxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Husband starting Hydroxycarbamide

Post by MollyP » 10 Jul 2014 19:31

Ps
I found multi vitamin B tablets really helpful, I had read a dose of b12 was good but I couldn't find them anywhere.
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Husband starting Hydroxycarbamide

Post by chris » 12 Jul 2014 11:44

Hi Molly

Ate cherries again! No response this time so mebbe it wasn't the cherries after all! But if not them, what was it?!All a bit puzzling.

Your allergy to potatoes? That would be my worst nightmare as I love them so much!! How does the allergy manifest itself? Sore mouth presumably? That sounds very painful.

Blood test results back. Neutrophils gone down to 0.5 - they were 0.7 -0.8 recently and haven't been as low as 0.5 for about 18 months but they have been low in the past and then bounced back so am hoping that will be the case. I do wonder if it explains the shingles though and the allergic reaactions? Will ask at next appointment next week. Platelets and Hb were as normal though lymphocytes were low and some comments on the results re some findings from the blood film in the red cells which I have no idea what they are! Long list of questions next time I am afraid! I feel I am brewing a chest infection - again a bit worrying in the summer - but the low neutrophils won't help me fight it. Hoping it will go away as I don't fancy any more antibiotics!

Rain here so let off watering for a few days!

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Husband starting Hydroxycarbamide

Post by MollyP » 20 Jul 2014 15:39

Hi Chris
I hope you didn't brew a chest infection.
Odd your thing with the cherries, I had an antihistamine the other day when my mouth was odd, I think it helped, my husband told me to try sensitive toothpaste as well and I think that might have helped too. Yes, not eating spuds is annoying but actually I don't miss them as much as toms and peppers as I use those a lot in cooking.
We won a bronze award on our allotment today so we are really pleased with ourselves as we didn't think we could win a prize.
I have turned my efforts towards the back garden now as its been a bit neglected so am busy planning a simple, grow it, prune it and admire it garden, hopefully I can pull it off, lol
Take care
Molly
Xxxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: Husband starting Hydroxycarbamide

Post by MollyP » 02 Nov 2014 17:10

Reporting in, hubby still off the chemo tablets and generally feeling well so that's nice. Bloods not bad but the monocytes have been creeping back towards 3 so I was thinking he would be back on chemo tablets by Christmas.

THEN

A very odd thing happened!

Hubby decided he wasn't happy about his blood pressure, went off and googled his tablets (ramaprill) and wondered why with all his ailments the doc still had him on them. Anyway, off to docs he goes, changes to another pill..... And the next set of bloods were all in the NORMAL range with the Monocytes having fallen back under 1.

To be honest I am not sure I believe it was his blood they tested, ha ha.

So, I will be interested to see what next month's bloods are.

Molly
Xx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
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