Day 110

[squirrellypoo]

Originally Posted by CDChilds

Does anyone know about the sucess rate with a BMT after having multi ATG treatments? I'm concerned because on some web sites they talk about his chances of engraftment becoming slimmer.

Birgitta's usually the wizz with the statistics so I'll wait for her to come by with those if there are any, but Prof Marsh never once mentioned anything like that to me. As you can see in our sigs, Laura and I both had ATG earlier on and our BMTs have been definite successes. Frankly, knowing what I know now about ATG only lasting 5-10-15 years, I wouldn't want to go through all that again knowing there was a cure out there that could beat it for good. And being younger definitely is an advantage in BMT survival rates, too.

[tserdogan]

Happy rebirthday Laura
Last month i asked my doctor to swim in sea,and he definetely said NO.I have to wait at least one year for swimming....I think still sun and sea is forbidden for all of us.

[Laura]

Well I had a great "birthday" celebration!! We went up to Minneapolis with two close friends of ours. We went out to eat at an Italian restaurant and celebrated my "birthday", their engagement, and Rachel's birthday. Quite the celebration!! Then we spent the night at a hotel and Saturday we spent all day at Valleyfair (theme park). It was so much fun. Even with wearing SPF 55 I got burnt pretty bad. I use to never burn even if I didn't wear sunscreen. I heard that we have to be careful for life of the sun as it can cause skin gvhd. Does being burnt affect anything? I am a little worried it could irritate the skin and such. I guess my skin is much more sensitive. Anyhow it was a blast. Tomorrow, my husband and I leave for Canada for eight days. Our first vacation since I got sick and since we have been married. I am looking forward to it. Maybe I will have some answers when I get back. I am still having gut issues. But I am allowed to take Immodium and that really helps. When I return I also have all my one year testing that had been post-poned.

Laura

[PH Steele]

I have not posted in awhile. I followed Rob and Vera closely and grieved their passing.

My young friend, age 21, is one year post BMT on June 26th. To celebrate, he went boating, horse-back riding, and out to dinner. He is am amazing success story--perhaps pushes himself a little too much to be back to normal. He is the 2 yr boyfriend of my daughter.

I am so happy for you who are one year BMT. The rest of you hold on as each day is a step forward to having your life back.

Does anyone have an update on Heather? I have not been able to find out any information in several months. I know she was close to Vera, and it hurt to lose her.

[Laura]

Today was a great report from my doctor. My counts are the best ever. HGB 13.something, WBC 7.1, ANC 3000, PLT 105!!! Finally hit the 100 mark!!! Everything came back great for the most part for my one year testing. I have osteopenia so we have to watch to make sure it doesn't become osteoporosis. My BMB only shows 30 percent but improved from the 5 percent when last checked. I will get my first slew of shots tomorrow too. I also don't have to return for 2 months unless something comes up sooner!

Laura

[tserdogan]

Great wbc.Great counts.İs there any medications you use?

[squirrellypoo]

Great counts, Laura! I wonder if the bone density stuff is more related to the antibiotics post-transplant than to the chemo itself. Every time I was on antibiotics I need constant IVs of one mineral or another as they leeched everything out...

I hope your holiday was great - our Paris trip was AMAZING! The fridge is still jam packed, ha. And my rebirthday is in one week's time!

[Laura]

Oh yes, our trip to Canada was great fun. Although, we didn't know the G20 summit was in Toronto so that was very interesting. We saw lots of cool sites and did lots of walking. One day about 8 miles!! Although it probably wasn't as cool as Paris Are you doing a bunch of tests for your one year post transplant?

I am not sure about the antibiotics affecting the bone density. I was told from the chemo/radiation. But that is an interesting thought.

Laura

[Laura]

So I got the final chimerism back...it actually accidently got redone so the results are...
Blood chimerism 60 percent donor/40 percent my own
T Cells 20 percent donor/80 percent my own
Blood making cells 100 percent donor
Bone marrow 90 percent donor/10 percent my own

Only 30 percent cellularity in the bone marrow.

All this chimerism stuff is driving me crazy. It is constantly changing. It sometimes makes me worry that I will lose the graft completely.

Also, I went to the dentist today and basically my teeth are pretty bad. The dentist said it is from the radiation and actually she has seen much worse. Basically I have 7 teeth that are rotting. This is even with me taking excellent care of my teeth. Has anyone else heard of this happening with radiation?

Laura

[squirrellypoo]

Hi Laura. I'm sorry to hear about your teeth - has your dentist suggested what to do about them? I've got my dental checkup next month, and I was most concerned about getting rid of the (still there) mouthwash staining before I read your message. Eek.

Your chimerisms seem to look better than before though? To my eyes, it looks like the blood making cells and the bone marrow are the most important for the long-term and those look great. I'm a bit confused by the T-cells though. To be honest I really don't know much about chimerism results despite having a biology/genetics degree because I personally never had to deal with them. :/

Hang in there...

[Laura]

They just recommend fluoride mouthwash and if it gets worse they are going to give me a prescription fluoride toothpaste.

So my gut has been acting up AGAIN the past 2-3 weeks and I have a recurrent infection so they want me to see the infectious disease doctor to see if they want me on a long term antibiotic to treat it.

Laura

[Laura]

I can't seem to kick this infection in my gut even with two oral antibiotics (seven pills a day). I see the infectious disease doctor again tomorrow and I may need to be on a long term therapy with a slow taper. I am sick of the bathroom!!!

[mausmish]

Ugh, that sounds miserable, Laura. Hope you feel better soon!

[Laura]

Well the gut is still acting up but much better.

And now I might have a flare with the GVHD/BO in the lungs. Hard to tell right now but my dry cough has returned. I can't get into the pulmonologist until the 18th.

Laura

[squirrellypoo]

oh dear, Laura, if it's not one thing, it's another!

Have they given you anything to help ease the cough symptoms while they sort out the cause? Like an inhaler or cough syrup or anything?

[Laura]

Yes, I am using an inhaler and that seems to make it easier. If it gets worse I could always ask for some cough syrup with codeine or something.

I just got out of the hospital with more issues with my gut and another scope.

Blah

Laura

[Laura]

So my gut is still acting up. I got some meds switched around today to see if they would help. Added Lomotill, changed Potassium forms, etc. I take so much Potassium a day and it is a burden. I know that sounds bad, but it is to the point of making me sick. They added Aldactone, which is a BP med, but is also used to raise Potassium. We are going to use this to try and get me off some of the Potassium.

I have my appointment tomorrow with the lung guy to see on the GVHD in the lungs.

My platelets hit the 107 mark!!!

I am having pain where my gallbladder is located. I have an ultrasound tomorrow to check things out.

I might have...of all places...vaginal GVHD. Had no idea it existed...but it does...won't go into too many details...but now need a GYN apt to follow that up.

One of these days I won't spend all my time at the doctor and taking so many meds..50ish medications a day I take!!

Laura

[squirrellypoo]

Oh no! Oh you really can't catch a break here, Laura.

Is it next week you see the gut specialist again? Hopefully he can give you some relief. And as for your lady parts... geez, these are things they never tell you in the pre-transplant sessions! Fingers crossed the gyn can sort it because that doesn't sound like fun.

At least your platelets are up, though! You have to celebrate the victories when you get them with things like this.

[mausmish]

Laura, sorry to hear you're going through such a bad time. I hope the doctors can help you get everything right again soon. I agree with Melissa about celebrating the small victories. My life mantra and advice to others has always been, "Happiness comes in moments... rejoice in each one you can seize." But i never realized how much this would mean to my husband and me until this past 8 months. Lately, we've been having biweekly platelet celebrations with each blood draw. May your platelet celebrations be many and often!

Melissa, can't wait to see your wedding pix!

[mausmish]

Laura, sorry to hear you're going through such a bad time. I hope the doctors can help you get everything right again soon. I agree with Melissa about celebrating the small victories. My life mantra and advice to others has always been, "Happiness comes in moments... rejoice in each one you can seize." But i never realized how much this would mean to my husband and me until this past 8 months. Lately, we've been having biweekly platelet celebrations with each blood draw. May your platelet celebrations be many and often!

Melissa, can't wait to see your wedding pix!

[tserdogan]

Hi Laura,

İs there any new news about your apointment with lung doctor.How is your ultrasound results?
I am thinking about that your counts are increasing but this will bring small GVHs,and dont forget minimum two year or more is needed us to complete recovery.Patience and patince is our second cure

[Laura]

Going to increase Flovent to 6 puffs twice a day. Otherwise my lung functions look okay. So just something "to keep an eye on".

Have an apt with surgery on Wednesday to see about removing my gallbladder!

Thanks guys. Laura

[Laura]

BEST NEWS!!!!!

My Potassium came back at 4.8!!! Highest it has been in over two years. And that is with ongoing gut issues. Thank you Aldactone!!!!!!!!!!!!! Now I get to drop to 4 pills three times a day from 6 pills three times a day.

[mausmish]

That IS great news! Happy to hear it.

[Laura]

Well my gut is still misbehaving like crazy but is somewhat better since I have started taking liquid opium..which is used for diarrhea..crazy, I know.

Anyway my BMT dr finally referred me to see GI since they can not seem to find what is causing the severe nausea and diarrhea I am having. The dr said maybe someone got ruined during transplant?

I am now switched to long term therapy for prevention of the CDiff. I am told I will be on it until I am off all antibiotics, which will be years. It is Vanco twice a day.

Otherwise all counts are normal except my plt which were 117. And I can't believe my HGB is high 14's too!!

Still having a few other issues too but prefer not to type it all out here.

Laura