Want to talk…….

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• October 2, 2016 at 11:51 am #30592
  nativitie miller

  Participant

  Hi my name is Nativitie, i am 34 years old and i was diagnosed with Trisomy of Chromosome 8 MDS in February 2016. I was sent to KU Cancer Center in KC because I stomped the docs here near my house due to my age. KU went ahead and did another biopsy and confirmed that. I was just a fluke that they had found this. Routine blood work showed something going on. I am in the beginning stages. Right now my only option for treatment is a bone marrow transplant The killer part is not knowing when that might happen. I want to reach out to people that are similar in age or in the beginning stages as well. I know everyone is different but i would love to talk/email about how this disease is effecting you and compare. I have a wonderful support system between family and friends. but i would also love to expand that. I am also curious on what type of side effects may come. Thank you. 🙂

  October 4, 2016 at 11:10 am #30614
  Deborah Hodge

  Participant

  My mother is 83 and has MDS. She has taken procrit since August and the Dr. raised her shot from 40 to 60 about 3 weeks ago. Her red blood count stayed up after getting 1 unit and increased for 2 weeks in a row. However, this week it had dropped from 9.1 to 7.2. We are bewildered at how and why it dropped so quickly. She has suffered terribly from the side effects of the higher dose, but was willing to suffer because her hemoglobin was going up. What in the world could have happened.

  Discouraged

  October 5, 2016 at 3:43 am #30620
  lucyls lucyls

  Blocked

  MERGENCY expert services have drained a dam from Asics Running Shoes Outlet the Barossa Valley soon after it burst its financial

  institutions and sent drinking water gushing toward the town of Greenock.
  A significant hole shaped inside a wall of your 20-megalitre dam, off Dommenz Rd, enabling h2o to rush towards Greenock Creek, which flows through the centre from the city.
  About one hundred twenty CFS and SES volunteers converged on Greenock just immediately after 11am to guard residences and enterprises from possible flooding.
  Light Team Officer Randal Searle claimed there were early fears that houses could well be inundated.“The initial operate went by means of the town and put some residences less

  than danger,” he said.
  “We were being concerned it may get far more on the bank out and it would pose a much bigger threat in town but this cut-off date that does not appear to become the situation.
  “It is apparently secure.”
  Mr Searle mentioned crews would also drain the dam to lower the chance of flooding.
  “We’re essentially likely to drain some water from the dam … to fall the extent beneath the breach,” he said.Kapunda SES deputy device manager Judith Hackett stated crews

  ended up also sandbagging alongside Aged Adelaide Rd forward of extra predicted rain this night.
  “Because of every one of the rain … we’re using every single precaution to forestall (flooding),” she explained.
  Greenock Creek Tavern manager Alicia Coombs said Snapbacks caps clearance sandbags have been positioned across the lodge to guard

  its underground cellars, which housed its beer systems and kegs.
  “The cellars have been our major problem,” she stated.“That is going to be a part of the complete investigation,” she explained.
  “It doesn’t come about really frequently and it is relatively abnormal in these circumstances that someone is offered in that way.
  “We should glimpse with the conversation that was there with all the corrections region.”

  October 10, 2016 at 9:06 pm #30639
  jennifer elmahdy

  Participant

  Hi Nativitie
  I am now 40 but was diagnosed with MDS at age 39. Whirlwind of second opinions at 3 different hospitals, all 3 recommended the bone marrow transplant “allotransplant”.
  Finding your donor is the first priority. Then finding the hospital and doctors you are comfortable with. You are young and can make it through your transplant. I will tell you that it is not easy. I was hospitalized for 30 days and it felt like a prison sentence. But with treatment gives you hope.
  Don’t give up, don’t settle for doctors or hospitals that you don’t feel comfortable with and gather around your friends and family for support. I have relied on them more than I ever thought imaginable.
  If you have further questions, don’t hesitate to ask.

  October 11, 2016 at 3:57 am #30643
  lucyls lucyls

  Blocked

  “On behalf of my fellow countrymen, who were Wholesale New Era Fitted Hats arrested and detained through the Malaysian authority … I apologise sincerely for our actions to the 2nd of Oct, 2016 … that have offended the feeling and sentiments with the persons of the wonderful region,” Whitworth reported.
  “We are remorseful of our actions on that day. We had no clue that our perform can be considered to get inappropriate, crass or even downright offensive on the citizens of the place. “Please know that we don’t provide the slightest of intention to undermine or degrade the dignity of your Jalur Gemilang (flag), this state or her individuals.
  “The incident was purely an error of judgment on our element and was finished in a very minute of folly and for that we are definitely sorry that we have hurt the sentiments of Malaysians generally.
  “We hence, without having reservation, apologise and convey our deepest regret around our perform from the afternoon on the 2nd of Oct, 2016.”Judge Harith Sham said no matter their intention, the lads experienced disrespected Malaysia by exhibiting the country’s national flag on their own buttocks and he hoped their arrest and detention might be a reminder about respecting the society and customs with the sites they pay a visit to.
  Their Malaysian counsel Shafee Abdullah claimed the lads – a number of them lifesavers – didn’t “blink an eye” when baring the swimming briefs and were unaware of how offensive this may be considered in the conservative Southeast Asian nation. Mr Abdullah explained to the courtroom that on Australia Day individuals were “encouraged” to sport bikinis and swimmers while using the countrywide flag.
  “They have Fitflops Australia spent 4 nights in a ‘not incredibly welcoming lockup’,” he extra. “I consider they would have uncovered their lesson much more than sufficient.” Mr Abdullah reported conservative Malaysians had been “a bit upset” from the stunt. “I feel we have cared for that with the unconditional apology,” he claimed outside courtroom.

  October 20, 2016 at 8:48 am #30731
  jenny kayal

  Member

  I have been using this clash royale hack android from the tricks here for gems and gold for the game. So those who play the game a lot need to have this clash royale cheats android also from this.

  • This reply was modified 7 years, 6 months ago by jenny kayal.
  November 7, 2016 at 3:26 pm #30864
  rft1111

  Participant

  I have the trisomy 8 as well. I’m not sure how much it really matters with regards to treatment. It seems that you are being encouraged to go a transplant route without even trying anything else. At your age, I might do that. This site is useful but confusing. MDS seems to have such a wide variety of symptoms in people and treatments vary so much, it is hard to get a clear idea of what is happening. Good luck which every way you decide. Use the search facility on this board and eventually you may stumble on something that approximates your “type” of issues with MDS.

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