Sarah’s MS Journey for HSCT treatment

Update posted by Sarah Ismail On Apr 07, 2019

Soo I have finished up 2 days early!! I had my ritixamab infusion yesterday over 5hrs and it went really well!! Just tired today. Rituximab attacks B cells. The Cyclophosphamide that is given during the beginning of treatment concentrates on attacking T cells. Dr. F. described it to me as hitting your disease with a one-two punch. One from each direction and that's the final punch 👊.

The hair on my head is the last to go and is hanging on lol. It's looking very mangey 😂.

I'm allowed to head outside and I'll be getting an early dinner with mum being very cautious masking up and using hand sanitizer.

Homeward bound.

Much love ❤️

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Update posted by Sarah Ismail On Mar 26, 2019

Day 7 in isolation, I honestly love isolation and don't want to leave it is so peaceful!!

They have to wipe down food that come into my room even tne boxes of things and only single use packets are ok.

I got to see my husband today for like 2 min on the other side of the glass as it has 2 entry doors, it was like i was in jail.

Yesterday I had a platelet infusion as they dropped to 15, doesn't help that my menstrual cycle came which they have stopped to help my platelet levels rise, all this is normal and today they have picked up to 30.

All my levels will start to rise as my immune system gets stronger.

Much love ❤️

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Update posted by Sarah Ismail On Mar 17, 2019

Hello everyone,

This morning there was a bit of a malfunction with my neckline catheter, they started my usual IV steroid and electrolyte infusion through the neckline and straight away I couldn't breath, couldn't stop coughing blood pressure dropped and I was trying not to faint. They stopped the infusion straight away and set me up on oxygen and continuous monitoring. It didn't take them long to figure out the neckline was the problem. They have removed the neckline and replaced with a normal IV bung. Feeling much better now everything is back to normal. So thankful for the Dr and nurses they truly are amazing absolute angels 😇!!

A bit of a scare but I'm 👌 now!!

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Update posted by Sarah Ismail On Mar 12, 2019

Chemo is finally finished.. YAY

Rest day today.

The last 2 day have been hard for sarah as her leukocytes are dropping from the chemo. She has constantlly felt so sick and have been vomiting. They give her meds to stop the vomiting, which helps but, but she cant keep any food down, she has been literally sleeping all day for the last 2 days.

Dr federenko reckons isolation will start in 2 days,And he always gives me positive reinforcement.

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Update posted by Sarah Ismail On Mar 12, 2019

Chemo is finally finished.. YAY

Rest day today.

The last 2 day have been hard for sarah as her leukocytes are dropping from the chemo. She has constantlly felt so sick and have been vomiting. They give her meds to stop the vomiting, which helps but, but she cant keep any food down, she has been literally sleeping all day for the last 2 days.

Dr federenko reckons isolation will start in 2 days,And he always gives me positive reinforcement.

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Update posted by Sarah Ismail On Mar 11, 2019

have now completed my stem cell extraction after stimulation, aiming for 2 million per kg after getting them after 2 days, sone people take 1 day and up to 3 days.. been absolutlly perfect no complications the tinest bone pain for like 2 minutes slightly tied, but nothing to worried about. After collection starts chemo!!!. Every day they are giving me steroids to protect my body from damage.

Stem cell extraction video.


Sarah xx

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Update posted by Sarah Ismail On Mar 05, 2019

The first week of testing is completed, the testing has been easier than I thought, I'm onto the start of the treatment, I've had 500mg of steroids iv every day. Which is for protecting my body when I get chemo.

I've had my head shaved, and a neck line put in to my jugular, where everything is extracted and given.

The steroids are making me hold on to heaps of fluid. But giving me energy at the same time.

The first week I could go out and see some amazing places, not it's time to stay in and get my treatment underway.

Some of the places we went

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Update posted by Sarah Ismail On Feb 27, 2019

Yay finally arrived in russia.

Unpacking in my room for the next month met with Dr federenko and staff. Finishing the last of my testing.

I was nervous at the start about the treatment. But Dr federenko assured me that everything will be fine and that I will be taken great care of.

Now I can't wait to get the treatment underway.

The view from my room isn't to bad either 😊.

Test's done:

Nose and throat swabs
ECG
Heart Lung abdomen ultrasound
Leg ultrasound
Lung capacity test
Bloods (lots)
Chest x-ray
Nasal x-ray
MRI

Day 1 of testing under way.

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Update posted by Sarah Ismail On Feb 21, 2019

omg, it's starting to sink in.

My mum my self and my husband's visas have arrived, I'm starting to get nervous as it's not far at all.

I'm not looking forward to the flight we fly from Melbourne Australia land in Abi Dhabi then across to Moscow get picked up at the airport by the hospital and go straight there.

My visa and my mum's visa is a business visa = over 30 days

My husband's visa = holiday visa 30 days.

As it's a 1 month treatment.

There is a lot of paperwork as u have to get invited to go to Russia ,but we had a guy handle the whole visa application over the phone it was hassle free and always in contact with him at every stage.

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Update posted by Sarah Ismail On Feb 17, 2019

OMG 1 WEEK TO GO! XX

Thank you to everyone who has contributed and helped in any way, To help me get to RUSSIA to improve my life it means so much.

My countdown timer for HSCT in RUSSIA

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Im 29 and been diagnosed with ms for 1.5 years.

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