Husband starting Hydroxycarbamide

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MollyP
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Joined: 04 Mar 2013 13:01
Location: South East England
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Husband starting Hydroxycarbamide

Post by MollyP » 18 Nov 2013 17:30

Hi everyone
We are just back from a very long day at Kings, it sure is a full day out.

The results of the bone marrow test and latest bloods have indicated that the white blood cells need some help so my husband has been put on chemo tablets, Hydroxycarbamide, other than being told to take them daily and not to miss a tablet we got no other information, not even a patient information leaflet in the box of tablets.

The bone marrow blasts are now 3%, where previously there was no count.

Should we have had some more information on these tablets, or is that all we need to know, does anyone know.

Many thanks
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)
lucy
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Joined: 17 Feb 2009 19:52
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Re: Husband starting Hydroxycarbamide

Post by lucy » 18 Nov 2013 20:27

Hi Molly,
If you "google" it, there is a lot of information out there from Macmillan, NHS etc.
Lucy
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Husband starting Hydroxycarbamide

Post by MollyP » 18 Nov 2013 22:13

Thank you Lucy I have been googling it madly.

We were given the all clear by prof to go on quite a big adventure to see family on the other side of the world even if hubby was taking them. BUT failed to say we were intending on going to a really hot country on the way for three days and that does seem to be something that you are recommended not to do.

Is there anyone here who has, or is taking Hydroxycarbamide that has travelled whilst taking them to the other parts of the world?

Any experiences, or information would be greatly appreciated.

Thanks
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)
Freddy

Re: Husband starting Hydroxycarbamide

Post by Freddy » 28 Nov 2013 21:41

Hi Molly,

My wife has CMML and was on Hydroxycarbamide in May 2013 when we went to Hong Kong for three weeks for a holiday.

It was hot and humid but she coped ok, we just paced ourselves and did not over do it.

We have been frequent visitors to Hong Kong so knew what to expect.

My advice is to get good travel insurance, get a letter from your consultant to say your husband is ok to travel, with details of the tablets he takes, and go and enjoy yourselves.

It will be a real tonic for both of you..... it did us the power of good.

Best wishes to you both, David.
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
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Re: Husband starting Hydroxycarbamide

Post by MollyP » 18 Dec 2013 20:43

Thanks David
We have tonight been for a checkup visit, the chemo is doing a good job, needs slightly tweaking to bring WBC further into normal range but the Hg has come down.

We are planning our trip now, not quite sure when we will go but hopefully at the beginning of the new year.

I am trying to think on these tablets as you would blood pressure tablets, you are on them forever and you just take them and are monitored. It's a bit odd because I had chemo for cancer a couple of years ago and I am having trouble removing myself from my experience which was completely different.

Wishing you and your wife a very Happy Christmas

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 » 15 Jan 2014 22:46

We had excellent news today. My husband's blood test came back with all the elements in the Normal range. A massive relief and giving us huge faith in the chemo tablets.

We have been given the go ahead to take our trip and enjoy ourselves. So tomorrow we will be making nice plans.

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)
chris
Posts: 620
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Husband starting Hydroxycarbamide

Post by chris » 20 Jan 2014 15:41

HI Molly

Great to hear some good news!! Long may it continue!

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 » 08 Apr 2014 22:12

Well we made it to the other side of the world and back in one piece and had a wonderful time.

We went to Kings this week AND the Hydroxycarbamide tablets have worked so well in bringing the bloods back into the normal range that the dose has been slightly reduced! We are shocked and delighted. I know this can easily go the other way too which is what we were expecting but I now feel at ease with this treatment. My husband is in excellent health, long may it continue!
*** *** *** ***
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: 620
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Husband starting Hydroxycarbamide

Post by chris » 09 Apr 2014 12:50

Dear Molly

Great news. So glad your big trip went well, your husband is feeling great and chemo has been reduced. Good to hear. And Spring is here and the sun is shining and all my litttle tomato seeds are coming up!!

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 » 27 Apr 2014 10:48

Feeling a bit confused.

Hubby off the Hydroxycarbamide tablets as his platelets and neutrophil's are too low. all the other elements of blood are in the normal range so it's now gone a bit too far the other way. he still free perfectly fine apart from aching legs, but he walks several miles a day, chops wood and digs the vegetable garden, even my legs ache!

now on weekly blood tests, also been told to avoid infections.

I thought they had stabilised it, I think we are now going to be yo yo ing with the Hydroxycarbamide.

Has anyone else had this experience.

Many thanks
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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