[Joseph Agustin]

My father was on vidazza for his mds-ra. It was used to stack his cancerous white blood cells and did a good job. He was brought from around 16%-17% blasts down to about 10-12 over the course of 4 or 5 cycles. 7 days on 3 weeks off. Unfortunately as his blasts went down myelofibrosis crept up and reared its ugly head forcing a stem cell transplant ASAP. Dads form was very aggressive. He would get tired and lethargic but that’s what happened when his red blood count dropped below 6, we tried to maintain 7 through infusions 1x a week.

[Joseph Agustin]

Thank you very much. While I am
No trained expert, I had a wonderful person from this site help me through a lot of it. I cannot go forward without offering my help to others. Dad has leukemia and myelofibrosis and the reason his transplant was so very risky was bc half matches are t done for mf. The chemo prior to and after transplant was the key. If anyone has any questions let me know.

Joey

[Joseph Agustin]

I started a new thread since I couldn’t find this one. It’s titled 5.5 months post transplant

[Joseph Agustin]

Yes, red blood cells transport oxygen. When your red blood count is low there isn’t enough blood to transport required oxygen. When my dad was diagnosed with mds, it was very fast in its progression. But walking up stairs he would get winded. One time walking my niece around the block he turned yellow and had to sit down, his body needed more oxygen then he has red blood cells to transport it. It’s not a matter of your body or lungs not taking the oxygen in, it’s a matter of the blood not being there to get it where it needs to go. We could gauge his rbc level by the speed at which he would get exhausted.

[Joseph Agustin]

So, after the draining of the water on the lung and the week of heavy conditioning the transplant took place. He’s now at the apartment we got him next to the hospital. Someone is with him 24/7. For the first couple weeks after transplant he was getting either blood or platelets daily in clinic as well as minerals like potassium or magnesium. He was able to skip a day at the hospital last week bc his levels were starting to level out. He is on the upward swing of things so far. His bone marrow biopsy read last Thursday showed 100% of his white blood cells were gone and all his wb cells were donor cells from me. His wbc count bounces between 3.6 and 2.8 with a slow tick towards progression. He is super light and very tired, not eating much. We force him to walk daily or do exercises in the apartment. Doc thinks he’s doing very well pops is holding in there.

Rose, if you have any questions let me know. Gimme a call or shoot me a text, 757 818 0712. There is a very nice young lady on this board who essentially helped me help my father through this and I shall pay it forward.

[Joseph Agustin]

Transplant went off without a hitch yesterday. The new coming weeks will tell the tale. He’s been a strong man through all of this, which is a testament to the man he is. Drs are all positive. We’ll see how things go

[Joseph Agustin]

So I started nuepogen on Friday. Dad started hisnchemo regiment. Wed. It was one type wed Thur fri sat. They weren’t so bad, then he did a different type yesterday and that took some energy out of him. Today he had radiation. 2 days ago his red blood cells numbers were at 7.7 and holding and white blood cells were 2.5. Today his red blood cells were 7.3 and white was….0.2.

They drew cells from
Me today, using the peripheral blood way. They ended up with between 377-400 ml of white blood cells, the doc said my body responded very well to the nuepogen making about 2x what someone would in the same time span. I was expected to donate tomorroww as well but they got their goal plus some today so I’m off the hook.

I did not take any meds (Tylenol or Claritin) while I was on nuepogen. I figured if my dad went months with a partially collapsed lung and fluid on his lung, endured months of injections and transfusions and chemo, if he can handle that I can handle this.
Day one was fine, no noticeable issues. Day two was fine, the night of day 2 was pretty uncomfortable. The pain was a deep hollow type of pain, blunt not sharp. Felt it mainly in lower back and hips and my upper neck as well as sternum. It felt as if the pain radiated from the inside out. It wasn’t unbareable. I played rugby for 13 years at a pretty competitive level and work out very hard (5’10, 205-210 pounds). It was as if I had a very very hard leg workout. It was more annoying then painful. As I write this there is some lingering pain in my hips but again, feels like a good workout.
Dads transplant is scheduled for tomorrow. Fingers crossed, prayers made, the field is striped, let’s play ball.

[Joseph Agustin]

Your exactly right!

[Joseph Agustin]

Thank you so very much

[Joseph Agustin]

The expected day for transplant is Tuesday. I’ll be on nuepogen up till that day. I’ll keep everyone posted on how dad does as well as side effects of nuepogen

[Joseph Agustin]

So, dad was admitted last wed with the intention to start chemo and I would start neupogen Friday. They ran dads labs and his blast count was much higher then anticipated. The transplant conditioning regiment for the pre transplant therapy wouldn’t have done much.

They spoke with some doctors from Johns Hopkins regarding haplo transplants and his situation and came up with a plan. That plan has harsh effects on liver and kidneys so they ran more tests on them and losses some cysts on kidney. Another day behind, another test, cysts came back benign. The dr didn’t like my dads cough either so prior to transplant he ran more extensive tests on lungs and he had fluid on one and it was partially collapsed. That was last Friday, Monday was the draining procedure, the dr took just over a coke cans worth of fluid off his lung, he immediately coughed less and breathing was much better. He started conditioning regiment wed and I started nuepogen today. I’ll keep you guys posted.

[Joseph Agustin]

Yea, when your out of time your out of time. I’ll let ya know about the fibrosis complication

[Joseph Agustin]

Thank you all so much . I’ll keeep everyone updated

[Joseph Agustin]

I greatly appreciate your input. Yes your right about researching, I’ve also been a strong proponent in knowing as much about your advasary as possible. If you want to win a fight you need to know what your fighting.

As far as second and third and fourth opinions, I think we’re on the right track. As far as trying experimental things and such, I see the value in it, but we’re out of time. He needs a transplant ASAP, as in the 23 of this month. He was given a few months to live otherwise, very atypical and progressive. I feel we’re on the right track. Thank you and god speed

[Joseph Agustin]

Absolutely. I was sincerely upset with the first dr my father had. While I’m still pissed to no end, I have to remind myself that drs practice medicine, they don’t master it. Still pissed however. I wish you luck on your journey and hope that you have the ability to maintain that forward thinking attitude and fight you display.
I also think, while being a devoted Christian, there are things that fall in the substrates of the butterfly effect. Everything we do has an effect on something else. If it’s
Not on a grande scale it’s a minute scale, it’s either directly relative or indirectly relative. The drs seem to think my father had mds and myelofibrosis all along, bone marrow slides showed very small traces of fibrosis in the beginning but the mds was so atypical it was what needed to be addressed. As soon as we got his blasts numbers down it opened up
The marrow for the fibrosis to take hold. There are never any voids in the world as everything has something to take its place and this is a perfect example. It definitely did a number on my father’s psychological game. As soon as he thought he was winning, he gets hit harder, and still
No transplant donors on the list. But, I’m a god fearing man and maybe faith is something to
Keep us from
Becoming conspirical, but dads a godly man and he won’t be put in a position that he can’t handle. I’ll keep y’all updated as time
Presses on.

[Author]

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