Transplant in 2 weeks
January 3, 2019 at 12:05 am #44817
I don’t know if anyone has been following but with everything going on in my life at the moment this is a good place to talk about it.
Pops was diagnosed (male, 65) about 8 months ago with mds. His dr wasn’t much help, I started going to the dr appointments and realized the dr was t doing much. I met a wonderful survivor on here who told me I needed another opinion as it can get out of hand quickly. After our last appointment with that dr and my getting removed from dr office, I located an awesome dr at Virginia oncology. He was quick on the ball and to catch dad up. Our saving grace at this point was going to be a stem cell transplant. His white blood cells or myoblasts were on the rise, 16% on avg and over 6 months went from transfusions every now and then to every week and a half (when red blood cell count hit 7). Pops started chemo while we waited on vcu to locate a good donor. During the wait pops went through 4 cycles , maybe 5, of vidazza, 7 days on 3 weeks off and a shot of arsnesp once a cycle. End of oct start of nov we had a followup after a bone marrow biopsy. Good news, myoblasts were starting to become under control. Bad news, myelofibrosis has shown its ugly head and with aggression. Docs say he may have always had it, it just so happened when the white cells were under control the fibrosis took advantage. We had a quickly scheduled dr appoint with the transplant hospital and the dr gave my father, the strongest most invisible man I know the news. You don’t have much longer. He didn’t say to live, but everyone knew what he meant. Why haven’t we done a transplant yet you may ask, there were no high grade matches, no 8 or 9 out of 10 matches on the national registry. My father brought that point up to the dr and he confidently responded with the dna tests prove I’m a solid half match, possibly 6 out of ten and that half matches are done all the time for mds. The problem lies with the fibrosis. As far as I know half matches are not used for fibrosis, only almost full matches. It’s been done a couple times but still very clinical trial stages here in the USA. He assured me that a college in Texas is working hard on it and it’s done in Italy, and he has been and will continue to be in touch with them, but we needed to remember that pops has fibrosis and mds. Dad asked what the success rate is, dr said he doesn’t have an answer, it isn’t done enough. I saw the overwhelming look on dads face and I winked at him and told him to ask the dr what the failure rate was, and he did. Doc said we don’t really have one. I said exactly, nothing has been done till it’s done. I keep a strong face for my father, the one he taught me keep, and for my mother and my sisters. But deep down inside, this day we have been praying for for months is coming up on us full throttle. It’s scary. It’s as if we could stay in the prep stages forever he’d never be gone. Selfish I know.January 4, 2019 at 7:48 am #44893
It frustrates me at how little information is out there. I’m an accountant so everything is black and white, so the answers you get with MDS questions are not satisfying. Your family and your Dad are in my prayers. If you are spiritual I hope His peace is with you and will get you all through this. If you are not, then I hope knowing many of us out here are experiencing the same trials and are with you will bring comfort. Keep us updated.January 4, 2019 at 8:52 am #44894
Thank you for the kind words.
As far as being spiritual, we are Christian non denominational, my father is a pastor and the chaplain for my police department. He is a kind man and a good role model.January 4, 2019 at 11:00 am #44895
Dear Joseph, Thank you for sharing your journey with MDS with us. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. I can also help arrange a preferential appointment for one of our MDS experts to see your father.
Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have wonderful educational resources that we can mail to you. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact me at firstname.lastname@example.org.
January 10, 2019 at 7:04 pm #44909
- This reply was modified 4 months, 2 weeks ago by mdsfound.
Joseph – Thank you for opening up about your journey and father. You’re a deep thinker man, wise and a big heart. You are both lucky to have eachother. It made me see that by changing one thing in your body, you effect everything else. Reminds me to keep all my practitioners in the loop, it’s my life, and professionals often make mistakes in their jobs…i know i do. So, communication and information sharing, key to do. I’m taking supplements which are affecting the same blood chemistry as the procrit and vidaza and chemo therapies… so, why shouldn’t ‘western’ and ‘alternative’ medicine both talk with eachother? It’s our responsiblity to make the integrative medicine paradigm work now for us… while the business/government systems catch up. Our resources are out there… we need to be the proactive ones now and always. Just sayin.January 13, 2019 at 1:17 am #44920
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.January 13, 2019 at 12:11 pm #44922
Joseph I lost a love one to various sarcomas over 8 years ago and after going through that entire experience the most valuable thing I learned besides being there as much as you can was being your own advocate as far as the doctors are concerned. They are people and unfortunately sometimes don’t excel to our expectations. In my friends case the “ball” was dropped on numerous occasions. It’s one thing when you go to the doctor for a common ailment, but when you are talking cancer and in some cases terminal its quite another thing. Confirm and double confirm ALL appointments. I can’t tell you how many times my friend had a CAT scan or MRI scheduled only to find out that when he went they couldn’t fit him in and had to reschedule. Someone on the doctors side had “forgotten” to make the appointment. My friend was being treated at Memorial Sloan Kettering in NYC which is one of the “best.” That is just one piece of advice. The other is DO AS MUCH research on your own as you possibly can. NO ONE will ever care or be as impacted as you. With the internet we have so much information. It can be overwhelming but just hang in there. I’m not saying be a doctor. Just do what you can and hopefully you find the answers your looking for. I did notice that you mentioned that you are in Virginia. I’m in no ways a medical doctor or practitioner but I have been following certain medical advances as of late. One on my radar is IMETELSTAT. It is a drug that targets telemorase in your DNA to combat MDS. Here’s a link if your interested:
Again I’m not a doctor and don’t know if its applicable in your father’s case. Every case is different.
They are recruiting for a study using IMETELSTAT and two locations are near your area – one in Bethesda, MD and the other in Baltimore, MD…..here is the link for that:
One more note, as of now this is NOT approved by the FDA but was granted fast track status in 2017. Data results from ASH 2018 in December on the P2 study were found to be “remarkable” and side effects were “predictable, manageable and reversible” and patients in that study were also VERY sick. Best of luck to you and your father. Be there as much as you can for him now and maybe once and a while try and do what you guys used to do before he was sick if that’s a possibility. Act like its not happening and cherish the time you have together. I sincerely hope the info I passed in your direction may help. If not don’t stop looking up ANY avenues. The sooner you can find a treatment that helps the better off you will be. Best to you and your Dad!! KeithJanuary 13, 2019 at 2:02 pm #44923
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 speedJanuary 13, 2019 at 2:58 pm #44924
My thoughts and prayers are with you and your family. Never give up hope and always stand strong until the bitter end. Best wishes for a successful out come with the transplant!January 13, 2019 at 5:56 pm #44925
Thank you all so much . I’ll keeep everyone updatedJanuary 14, 2019 at 10:10 pm #44934
Wow. My heart and prayers go out to you and your family. For sure half matches are done but I can’t add anything about the fibrois complications.January 15, 2019 at 11:08 pm #44940
Yea, when your out of time your out of time. I’ll let ya know about the fibrosis complicationFebruary 1, 2019 at 3:54 pm #45039
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.February 1, 2019 at 10:19 pm #45040
Joseph, you, your dad and all your family are in my prayers. My husband 64 years old was diagnosed with high risk mds at the end of October. He entered a trial at Univ of MD hospital in Baltimore. It was a little rough in the beginning but he just finished his 3rd round and his blood counts are looking good and his blasts are decreasing. If it is determined he can’t do the bmt please look into trials. We have so much available to us living in the DMV. God Bless and keep us posted on your dad.February 2, 2019 at 1:32 am #45041
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
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