Wow, what a difference in a year! It's amazing how fast AML takes over. I'm just about at 5 years since my diagnosis and it happened in a similar way.... I was at work one day just feeling a bit off and the next day I was too weak to drive myself to the doc appt.
Good luck with the boys. They'll be lucky to be with you.
We are truly blessed to have been matched with the boys. They are currently staying with a fantastic couple who wish to remain like grandparent figures in their lives. We have formed a nice friendship with the couple. Our prayer is that our visits will soon fade out & they'll be here permanently. Of course, we are waiting on meetings and court dates to happen.
Right now, we have gotten over the hump of "a year ago" when we first figured out something was wrong with Dan. I wanted to recap, in case anyone stumbles onto this thread who may be headed for auto transplant.
Dan visited the ER on 1/6/2010 with symptoms of anemia (pale, dark under eye circles, extreme fatigue, head rush, pulse *thumping*)
He had no bruising, fever or petechia. His WBC and PLT counts were all OK.
His HGB was 5.4 His first BMB only showed somewhere between 9-13% blasts. That was 1/8/2010.
During that stay at our local hospital, he received blood transfusions.
On 1/13/2010 he received more blood, locally.
For two weeks, we just waited for our appt. at UMMC. He didn't need any blood products.
At Dan's first UMMC outpatient visit on 2/3/2010 another BMB was done (those results wouldn't be available until 2/9).
At that point (based on local findings from 1/8/2010) we discussed treatment for CMML.
A week later, we got the call that the BMB and more specialized testing from 2/3/2010 showed that it wasn't CMML (never had been), but AML, M4.
Originally, Dan was to be admitted on Friday 2/12/2010, but UMMC and most of the east coast was buried in snow.
We were told to be there by Monday morning. His blast count upon admittance was somewhere between 21 and 30%
Induction Chemo for Dan was a three drug combo, Cytarabine, Daunirubicin, and Etopiside.
His day 14 BMB was totally clear and ever since, his BMB's have showed remission.
It seems like they treated him pretty quickly. Induction started 2/15 and ended 2/21 (7 days)
I think his total hospital stay was 21 days?
At his first follow-up after discharge, the doctor said they'd do Consolidation 2 weeks earlier then originally planned, since he tolerated chemo so well (no vomit, no mouth sores, no weight loss, no major gastro difficulites)
His counts had already come up by this appt. and he was able to ditch the mask.
During this two weeks, Dan continued to mountain bike and walk for exercise
Consolidation started 3/31 and ended 4/4/2010
Dan came home with *bottomed out* blood counts
This was the most nerve-wracking time for us. I took his temperature every 1/2 hour for days!
He did receive platelets during this time...and blood. He would go to the local hospital for count checks, come home, and return if he needed blood products
Conditioning started 5/11 with his Auto transplant on 5/18/2010.
Other than a few very mild fevers during his hospital stays, the only complication he had was pneumonia post transplant.
His hospital stay was about 21 days that time too.
We had daily appts. for 2-4 days after discharge (stayed at Hope Lodge) and then we were released to come home.
When pneumonia hit, he had been home for about 3 days. He got a temp of 100.5 and we went to the local ER.
He was treated with IV antibiotics locally (in the ER) and then we were sent home w/ 15 days of oral antibiotics. His follow up films showed that it had cleared.
Dan returned to work 7/14/2010 (he repairs and maintains locomotive engines)
So far, we have only battled sniffles a little cough or two, and so far, all BMB's and bloodwork show "no evidence of residual or recurrent leukemia" and all bloodwork is within normal limits.
Our prayer for 2011 is to keep it up!
I won't lie...leukemia can be a big, scary place. Not just for the patient, but for the whole family. 2010 took us to places we never wanted to visit. Our emotions were everywhere. Fear, concern, confidence, dread, happiness, worry...they could all hit within an hour! We both stayed firm in our faith in God (for strength...whether it was strength while Dan healed or strength to get us through if he didn't) and we prayed for understanding (not why is leukemia happening in our family, but what can we do with leukemia). We truly believe that our chance to adopt the boys is one of God's answers If we can take our experience with this disease, our experience as parents, and our love for God, for each other, and for our children...if we can use that *stuff* to help two little boys heal from their broken past, feel safe and happy, and help them thrive...then this journey, for us, seems a little less horrible, a little less life-altering, and more like a piece in the puzzle that is life.
I just wanted to share to see if anyone else has experienced this... for about a week or two Dan has been having a sore/sensitive scalp. He said it feels like he has a sunburn (whether he's touching it or not) and if he moves his hands around on the top of his head, it feels like his hair has been pulled (kind of like when someone wears their hair in a pony tail all day.) Last week it was more on the sides of his head & now it's the top of his head. He has recently trimmed his hair with clippers & is just starting to grow in *normal* hair. Before it was baby fine & now it seems more like it's old texture. I think it may have something to do with using the clippers on a dry (not flaky) still sensitive skin.
We went to our regular family doctor yesterday to have him checked out for sinus infection, etc. (to see if it was a sinus pressure headache) and they sent him for labs on his Vitamin B12, Magnesium, and TSH. His TSH (thyroid) came back slightly elevated. They want to monitor for a few months before putting him on meds to see if it corrects...also we will tell his Oncologist when we visit Baltimore next week for his BMB, labs, and appt.
Has anyone else felt the scalp soreness/sensitivity or had elevated TSH after transplant? Again, Dan is auto for AML...9 months post transplant.
It may be that his thyroid was affected by drugs. TSH can be elevated when the thyroid is underactive . My husband was diagnosed with hypothyroidism and is now on Synthroid. This is not uncommon for transplant patients, though my husband had two allo rather than an auto.
Hypothyroidism can make changes in skin, such as, again in my husband's case, dry, patchy elbows. He also got tired a lot and felt as if he couldn't think as clearly, which also are symptoms of an underactive thyroid. Hypothryoidism makes the hair look less healthy. It also can cause weight gain.
But once he was on Synthroid (which he will be on for life), all of his symptoms went away.
I dunno. My scalp is sensitive sometimes, I just figure it's fry and or I'm getting old and this happens to old people.
Just remember, we can still get things that are completely unrelated to our disease and/or transplant. Still, you mention that his hair is changing texture. It could be nothing more than that.
Again, I dunno. If it's an issue, ya'll might want to see the doc.
Today was Dan's BMB and bloodwork. We are at 11 months remission & 9 months post auto SCT. His WBC is 3.8, Hgb. 14.2, and Plt. 161,000
We will have full BMB report in a few days
The doctor said today that if all looks good on the report, we can consider March 1, 2011 one full year of remission
Dan was bumped from BMB's every four months for two years to a BMB in August 2011 and another in late Feb. 2012
If all goes well, that will be his last
We are to still do labs every 2 months for now
Those counts look fantastic! I can't imagine anything funky going on with results like that.
My Lindas eyelashes started to break about 2 months ago. I read that Hypothyroidism causes changes in hair and asked them to test her and ...walaaaa.
She too is on Synthroid for a number of weeks and the lashes seem to have returned. I'd bet it may be something as simple as his thyroid causing scalp sensitivity.
I hope you return with good news on the BMB and answers on the scalp.
Just signed up for this board because our dear friend has been diagnosed with AML-M4 and just left the hospital yesterday after the first 7 days of the chemo (induction?). Bone marrow biopsy came back that he's in remission and now they are going to see about a transplant. Why would they not do the consolidation (which the MDs had originally thought they'd do) and go straight to a transplant instead? Also, I am just curious, how old is Dan? Our friend is 59 and it seems that the success stories I am reading are for people much younger. Anyone out there diagnosed and doing well in their late 50s? By the way, congratulations to you both! This is fantastic and uplifting news and offers hope for others!