New drug update

Going through treatment
21

Great that you have found others on the forum :blush:

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22

Thank you Nichola 75

Would you or anynof your colleagues have any contacts have contact organisations in the USA to expidite information with regard to Fedratinib

Regards

KBROZ

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23

Apologies for the typos !!

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24

Hello again @KBROZ,
I am so glad you have joined the Forum and it was good to talk to you on Thursday on the phone line. As ever I will update you if I hear any more about Fedratinib and I know you will do the same.
Thanks again for sharing your experience as I am sure it will be invaluable.
Kind regards
Gemma

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25

Afternoon

I will stay on the case !!

KB

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26

Hi @Suzyq I have been thinking about you and wondering how you are doing now?
Look after yourself

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27

Hi Erica have been in hospital for 4 days with really painful backā€¦at first they thought it was kidney stones but after scan it was a no no .they ciuldnt find out what it is so im home with codeine and oramorph

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28

Hi kbroz im on fedratinib been on it 3 weeks now i think i have to wait to see how i progress on it ā€¦unfortunately i have spent 4 days in hospital with unexplained back pain ā€¦at first it was thiught i had kidney stones but it was not so im home on codeine and oramorph
Maybe we can keep in touch through this forum and help others who may go on fedratinib

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29

Good afternoon Suzyq

I hope you continue to get better.

I think it is an excellent idea to work on issuing information on Fedratinib, to date I have found your accounts of great value.

I have had little success to date in sourcing feedback from the USA but will continue to persist.

Thanks again to everybody on this forum, knowledge and information is such a positive factor to me.

Regards

KBROZ

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30

Gosh @Suzyq a really painful back sounds more than really painful to me.
Thinking of you.
Please let us know how you get on.
Take lots of special care of yourself.

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31

Hi @Suzyq I have been thinking about you, how are you doing now?
Look after yourself and be kind to yourself

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32

Hi @KBROZ I have been thinking about you, how are you doing now?
Look after yourself

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33

Good afternoon Erica

I am fine thank you.

On route to UCLH for a scan.
Never a dull moment it would seem !!

I hope you and your colleagues are all well.

Regards

Kevin

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34

Hi @KBROZ please let us know how your scan goes.
Iā€™m doing OK, look after yourself

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35

Hi Erica

Thank you for your message.

Scan was inconclusive ,MRI to follow for another view.

Little or no chance of it being of any significance.

Regards

K BROZ

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36

Hi kbroz im on my 7th week on fedratinib and had a few side effects but im seeing consultant tomorrow and sure they will help with thisā€¦i will update after seeing my wonderful care team

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37

Morning Suzyq

Great news on your new treatment, keep going !!

Regards

KBROZ

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38

Good morning Suzyq

I hope you are well and doing great with Fedratinib.

I am due to commence the same im a month.

Take care and have a good weekend

Regards

K BROZ

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39

Hi Kbroz i have been on fedratinib for 8 weeks now struggling a bit with fatique and loss of appetite which is strange for me as ive always been a good eaterā€¦a few other problems which have been sorted out by taking me off some of my meds prescribed by my gp ā€¦im keeping positive and pushing on hope you are well and looking forward to your new medication

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40

Afternoon Suzyq

Thats all great news , your positive atitude will make all the difference !!

I am looking to forward to starting Fedratinib and all the good that will follow

Regards

KBroz

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