MDS-from diagnose to transplant in 9months.

[lisa3112]

Sorry no advice! I'm sure you will.be fine. Enjoy and hope your flight is OK. Lisa 😊

[Rarity]

Hi Meri,

Maybe if you contact your airline to explain about your meds? Perhaps they can guide you. Talk to your Dr. about your concerns regarding if there is an issue of not having enough of your meds should you run out.
Hope you have a wonderful and safe trip!

[Meri T.]

Hello everyone,

The flight was smooth, the plane brand new, great food, great service, immigration and customs warm and friendly, as for me, totally exhausted !

The smallest aches and pain seemed to magnify when up in the skies. Cabin air pressure sometimes had my ears popping, but it HURT ! Tip: use those soft IT earplugs.

Airplane lavatories only have paper, there is no automatic washlets/bidets, so to minimize infection from urine or stools, I used a DIY "watergun", plastic bottle full of water, make small holes in the plastic cap, and just squirt to wash.

Time difference/Jetlag interferes with timing of medicine. Flying in from the West I gained one day. For my meds I calculated the hours for intake, instead of going by morning-noon-evening.
Some meds are for after meals, so I always have a snack with me when I am on the go, I can avoid taking the meds on an empty stomach.

Lots of coughing and wheezing heard on the flight. I wore a mask the entire time, the disposable kind. Drank lots of water and hot green tea.

Arrived safely, still jetlagged. Nausea and allergies have subsided ! Must be the California fresh air.

Thank you Ray. I have some spare prednisone for emergency. I was thinking of tapering by myself, but won't risk it.
Lisa, congratulations on passing the 2 year mark ! Happy birthday to your little prince too!

Love and prayers for everyone, please enjoy the weekend.
Meri

[Neil Cuadra]

Meri,

Your flight preparations make a good example for others who want to minimize the risks of flying.

It was very smart to adjust your medicine schedule, which is something many people wouldn't think to do.

[Meri T.]

Hello everyone,
The daytime San Francisco- Tokyo flight was much better than the TKO-SFO night flight. So unless you are the kind that can sleep anywhere anytime, then I recommend taking the daytime flight. And please, do go direct. Stopovers bring on more stress, not worth the saving.

All my meds were in my carry-on, together with a prescription.

The wheelchair service may help weak knees. But after sitting coach for 10 hours, walking is the better option.

I experienced itchy dry skin on the flight, and applied cream regularly. Also eyedrops for dry eyes.

I am lactose intolerant, so inflight menus from creamy cheese or scrambled eggs to chicken sauteed was out. Besides, my taste buds are still off, so I brought along some food that I preferred: Pate chauds !!

Heparin cream helps blood flow and hydrates skin. They have it in 25 gram small size tubes, or 100grams spray, so I managed to bring them in carry on luggage.

When using the lavatory, I recommend taking a tissue to wipe the toilet seat down, then before leaving, use another tissue to open the lock and pull out the door. That way you don't get any unwanted germs from knobs and handles.

My 10 months post transplant appointment is this Thursday 4/12. Let's see how much blood coins this trip has cost me .
All in all, I feel great, though I miss California already.

Easter Prayers for everyone on the forum.

Meri.

[Cheryl C]

Meri - great that everything went well on your journey. Re dairy intolerance, I always request vegan. Often my husband is envious of what I end up with as the vegan meals are usually very good. Also, you can get disinfectant wipes which are even better than using tissues.

[Meri T.]

Vegan meals! Why didn't I think of that before?
And yes, wet tissue wipes.
Thanks Cheryl.

[Meri T.]

Hello everyone,
Besides the itch, Thursday 4/12 appointment went well.
My liver counts are behaving, so the doctor decided to taper prednisolone from 10mg down to 7.5mg, a small taper but I am anticipating some withdrawal symptoms as my body gets used to the lack of 2.5mgs per day.

Blood counts:
WBC 8.4 (H) Dr says high due to steroid intake. (3.2-7.9)
RBC 4.14
Hgb 13.6
Htc 41.7
Platelets 177

Will be flying back to the US again some time next week. Will order VEGAN !

This should be in the insurance part: did you know that my travel insurance does not sell to those taking the drug prednisolone? It says so in the fine print.

Meri

[Neil Cuadra]

Originally Posted by Meri T.

This should be in the insurance part: did you know that my travel insurance does not sell to those taking the drug prednisolone? It says so in the fine print.

Meri,

Are you referring to trip cancellation insurance?

[Meri T.]

Neil,
It’s a Travel Health Insurance package duration 2 years in my husband's company (Japanese company) for their employees and their families for international travel. For domestic travel they already have National health insurance, so it's mainly used for international travel. That is, when we need health care in a foreign country.

The fine print conditions didn't only say in general "steroids", it stated very clearly PREDNISOLONE users, so couldn't be mistaken. I suppose I can apply when I'm off the drug.

Having surgery within the last 6 months was out too. I think it all comes down to a play of words: Is a stem cell transplant considered surgery?

I was once told that my MDS was not leukemia, was not cancer, just a "syndrome", a disorder.

I would love to hear from AA/MDS/AMl/PNH... people flying internationally what kind of insurance they buy.
Meri

[Meri T.]

Cherl,
Thank you for the tip on inflight vegan meals. It turned out better than I expected. There were no oily gravy, no buttery sauces... There was special gluten-free bread! My liver/stomach felt so much better on the 2nd trip compared to the first. Less nausea, no bloated stomach.

I have decided to eat more fresh salads. I do not even use salad dressing anymore. Washing vegetables and fruits to meet my immune system's standards is time-consuming, but well worth it: my liver is grateful .

Eat healthy everyone.
Meri

[Meri T.]

Hello everyone,
11 months post transplant. I have bad news and good news. Let's get rid of the bad news first:
Such a textbook case. If there is any GVHD that is in the manual, I had it or have it. (Sigh!).

GVHD of the vulva/vagina. Symptoms: itchy, burning sensation sometimes, white peeling skin (mucosa). Actually it started around a month ago, and I thought it was a flare up of my former urinary tract infection. I got my urine tested, which turned out negative for UTI, so I got some topical cream, a light steroid, for the itch and pain. Confirmed GVHD by elimination. The important thing is when showering or bathing, not to aggravate the area even with soap and water.

GVHD eyes. I always had a sensation that there was a foreign object, a speck of dust in my eyes. Now a part of the left eye is teary, my far-left vision is sometimes blurry. My doctor said that this is not a good sign. He wants to rule out CMV of the eye (!?) Never heard of that. So an appointment has been set up with the hospital's eye-doctor tomorrow morning. I saw her in February, and she knows about GVHD. I trust her, but still a bit anxious. Any advice for me, Ray?

Now to the good news.
Blood counts great:
WBC (3.2-7.9) 7.3
RBC (3.70-5.07) 4.30
HGB 14.0, HTC 43.1
Platelets (155-350) 192

GVHD gut totally under control, I can eat practically anything; preference has changed from rice to bread; hard crunchy foods to soft foods, sour to sweet (The dentist found 4 cavities!).
GVHD of the liver under control, the highs have developed a declining trend.
My prednisolone has been tapered from 7.5 down to 5mg/day. Still have moonface though.

I have an appointment with the hematologist, the transplant team and coordinator next month for my ONE YEAR post transplant. Now THAT is something to look forward to. Aah, the one year mark 2nd June, coming up soon.

Just wanted to update everyone on the forum on my progress. Hope it gives you some encouragement. You are all in my daily prayers.
Meri

[rar]

Hi Meri,

Foreign object in eye when nothing inn eye is a GVHD symptom along with blurred vision, dry eyes and photo sensitivity. After visiting 7 eye doctors I found one who also knew GVHD. He said critically severe GVHD of the eye. Only way to cure is systemic treatment of GVHD. After 4 years of GVHD I got more aggressive with my oncologist. He said my best hope was imbruvica. I have been on it for 6 weeks. My 'feel like I am going to pass-out dizziness' is confined to fewer hours and doesn't even show its ugly head on some days. The eyes now feel fine except in a bad GVHD attack. I had been having daily numbness of the face and around my wrist daily. It is mo
stly gone excerpt once during an attack. Sore throat and mouth sores also better.

I realize that GVHD attacks are different in everyone so you can be experiencing different symptoms. Eyes and skin are common. The only bad symptoms from the imbruvica are constipation which is controlled and mild muscle cramps. The drug is expensive, fortunately I am getting it for free. If you have good insurance you may want to try it. Conventional wisdom is GVHD gets better with time. Mind got worse. Oncologist says that its not uncommon.

I wish you success. I know what you are going through.

Ray

[Meri T.]

Ray,
Good to know that imbruvica is working for your blurry, dizzy vision. I will talk to my hematologist about the drug. My insurance is not great like yours, but I would pay to save my vision.

Today my eye doctor ruled out infection. So next week I have a test for glaucoma. If I pass the test, then it's back to GVHD. I do not know which I prefer, Glaucoma or GVHD. I will cross that bridge when the verdict is handed down next week.

Anyone on the forum had glaucoma? Would love to hear about your symptoms and treatments.

Meri

[rar]

I have glaucoma which was most likely caused by prednisone. So far it has only effected the top of on eye and I see no different. My IOP was measured as high as 32. The glaucoma eye doctor says it can be controlled with laser surgery that drills a hole in the eye ball which he favors. My GVHD eye doctor favors latanoprost eye drops. Lltanoprost is keeping IOP around 16. This should keep the eye from getting worse. Irregardless of whether you have glaucoma you should keep the IOP in range because some of the MDS GVHD drugs are bad on the eyes, I wish you success.

Ray

[lisa3112]

Hi! Sorry to hear about your gvhd! That would be the worst! Glad the cream is working. And eyes are frustrating!
But great blood results! Happy 1 year anniversary!

[Meri T.]

First of all, a big thank you for everyone on this forum that posted, letting me learn a lot and gain confidence as I was doing my journey, though still doing the journey...

I had my one year post stem cell transplant June 2017-June 2018. The blood results were very good, all in normal range:
WBC 7.4
RBC 4.33
Platelets 183

My GVHD is considered Chronic.
Eyes: Glaucoma was ruled out, and GVHD eyes confirmed. I am being treated with eyedrops, and the wait and see approach. I have crusty eyes in the morning. Watery eyes all day. I wear a mask and sunglasses when I go out.
Skin: The itch is cooperating at last, still there, though not so itchy like before.
Liver: liver counts still high, hematologist not worried. It takes time to bring them down when on steroids, he says.

I am still on steroids prednisolone (5mg daily) and immune suppressant cyclosporine tapered down to 25mg three times a week (that makes it about 3.8mg daily). Looking back, I think my transplant experience has humbled me. I am full of gratitude to everyone and for every day.

Hope this gives encouragement to those going into transplant. Any questions you have, please do ask, I will try to help in my limited knowledge capacity. Thank you again.
Meri

[Ruth Cuadra]

Dear Meri,

Congratulations on the first anniversary of your stem cell transplant! It certainly sounds like you are doing well. When I had my bone marrow transplant in 1998, I stayed on big doses of prednisone, cyclosporine, and later cellcept for a long time. It was about 3-4 years before I was off everything. I think your recovery is evidence of the many ways that transplant technology has improved since 1998!

Glad to know that Marrowforums has helped you along the way!

Regards,
Ruth Cuadra

[Rarity]

A BIG congratulations on one year Meri! Such a milestone. Hoping your GVHD gets better. I have been reading your transplant journey since it began. Thank you for posting and your journey is certainly encouraging. It is fascinating that everyone with MDS is unique and goes through transplant uniquely too.


Keep up the good work,
Rarity

[Cheryl C]

Well done Meri!! Congratulations. I hope you find good solutions to the GVHD which is plaguing you. Healthy eating is so important - you’ll experience many benefits. Best to be low sugar if you’re experiencing thrush-like symptoms. God bless.

[lisa3112]

Congratulations on your 1st rebirthday! You have done so well! Lisa

[Meri T.]

Thank you Ruth, Rarity, Lisa and Cheryl for your encouragement.

Yesterday, the hospital called me in for an 18month check up. Every 6 months there is a check for every post transplantee. After the one year post transplant, my immuno suppressant was halved, and I thought I could breeze through another six months.

It didn't work that way. Without the cyclosporine, my GVHD stomach and intestines went overboard: vomiting and diarrhea. I took a gastroendoscopy, found that the esopagus was inflamed. I was given some drugs: FLAGYL (antibiotics) and Repamipide (gastritis), and another drug for my stomach.

After about 8 weeks (a terrible 8 weeks), my stomach came back to normal, no diarrhea, but with some "burping" and "gassing" still around. I trusted my doctor, and I guess he was right, he did not increase my cyclosporine, but waited for my body to get used to the drugs. But try 8 weeks with a bad stomach! Food has less temptation now for me. Yes, Cheryl, food is so important. I think I was careless about what I ate.

Since I am still on immuno-suppressants, I still haven't taken all the vaccines yet.

GVHD: My eyes are getting better. Skin - the Itch, much better too. Liver, OK; IG tract - maybe a few more months for the GVHD to burn out.

My blood counts are great:
RBC:4.36 Hgb: 14
WBC: 6.8
Platelets: 188

Merry Christmas everyone ! Please stay warm and healthy.
I'll stay here for Christmas. Anyone coming over? I'll bring you around. I know lots of Ultra Clean Places to eat .

Meri

[Cheryl C]

Well done, Meri - good news at last. I wish you a lovely festive season. (Your blood results are enviable).

[Meri T.]

Hello everyone,

I have an appointment for 2 years post transplant coming up soon.

I will see the doctor in 10 minutes, no, maybe 3 minutes at the most, then I will be whisked out...
Would like to ask and learn something in those 3 minutes.
Well, I would say I have some skin issues. And that's all???

Any ideas would be appreciated.
Meri

[Neil Cuadra]

Meri,

How did the appointment go? Did you learn anything?