[KP2112]

Glad to hear good news Carrie. It is also good news for the bears up hear in Canada!

Kind Regards,
Karen P.

[KP2112]

April,

I am sorry for your loss. I know through the postings that you went through a lot emotionally in dealing with this. However, find comfort in the fact that your mom had things the way that she wanted and her wishes were respected.

I hope you find peace and comfort.

Kind Regards,
Karen P.

[KP2112]

I am sorry to hear about Bob’s passing. I was looking through some old posts and it was only a month or so ago he was writing in this forum. It is hard to believe.

I wish his family comfort and peace in this difficult time.

Kind Regards,
Karen P.

[KP2112]

Barbra,

Although I have not been part of this forum for a long time, you and Ron seemed to touch a special place in my heart. Perhaps it was your overwhelming drive to fight and not give up, your support for others and your expression of emotion.

I am truly sorry for your loss. At times such as these I often wonder why we are given the capacity to love so deeply knowing that one day a person will be taken from us or us from them. It does not make sense.

Find strength in what you know, your daughter, memories, your familiy and friends.

Wishing you peace and comfort.

Kind Regards,
Karen P.

[KP2112]

Ensnee,

Oh my goodness! My dad’s Dr. is Dr. McPhaden from Oakville. That is where my dad gets his transfusions. I have to say, McPhaden takes more of a laid back attitude so our family decided to go see a specialist at the PMH. McPhaden wasn’t suggesting anything except for Epogen and when it didn’t work, he told us it was too expensive to try again (or in combination with something else). I was really on my last nerve. He didn’t provide any options. I am so glad you are going to the PMH. I will keep in touch to see how things are going.

I have seen many life expectancy charts. I would tell Hans not to get distraught. As I have learned through reading and this website, life expectancy information is always changing, especially when treatment is involved.

Have a nice holiday weekend. Will be in touch.

Kind Regards,
Karen P.

[KP2112]

Just another thing I was thinking about, statistically speaking, men acquire MDS in far greater numbers than women (I can’t think of the % off the top of my head). This is significant because during the last 40-50 years men have had the jobs where there was a greater chance of exposure to toxic chemicals. I think there is definately a link here.

Kind Regards,
Karen P.

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Hi Naomi,

I believe that cigarette smoking, in the first person, could potentially cause MDS. However, I would have to tread lightly on trying to put together a link between second-hand smoke and MDS. When we are talking about exposure to toxins, the journals have indicated it is something that happens over a extended period of time with constant exposure like working with gas, solvents and fertilizers. I don’t think second-hand smoke falls into this category, but I may be wrong. We are all learning what we can and trying put all our stories together in the hopes of finding some answers.

Kind Regards,
Karen P.

[KP2112]

Hi Ensnee,

I am another neigbour, from Mississauga. It is very difficult initially to know what to ask for and from whom. Compounding that is that Canada does not have all the drugs that are available in the U.S. and elsewhere. My father is going to see his specialist this week. I am going to see exactly what can be prescribed in Canada. I will let you know about the options I find out about.

Kind Regards,
Karen P.

[KP2112]

Hi,

I have read in a few journals of medicine that MDS can either be hereditary or develop from exposure to certain toxic chemical agents. I think both are feasible explanations in regard to getting MDS. On the one had it is genetically profiled in a person’s makeup. On the other hand, your body absorbing chemicals on a regular basis and that being transported through your blood and seeping in bone marrow also seems logical.

What I can’t put my finger on are instances where MDS is not genetic and there has not been any regular exposure to toxins, how do chromosomal abnormalities develop or form? Perhaps there is a predisposition to MDS is these instances?

Kind Regards,
Karen P.

[KP2112]

Elle,

Also go to this Telik website. It will tell you more about the drug.

http://www.telik.com/trials_telintra.html#

Kind Regards,
Karen P.

[KP2112]

Hi Elle,

They are currently recruiting in various parts of the U.S: Alabama, California, Illinois, Oregon, Tennessee and Texas. If you go to the following website you can find out all about it. They are currently recruiting.

http://www.clinicaltrials.gov/ct/gui/show/NCT00035867;jsessionid=73521ACE1734F64E4627D5093316E0F7?order=2

Hope this helps!

Kind Regards,
Karen P.

[KP2112]

Andrzej,

Wishing your father all best in this time of overwhelming challenges. Take care.

Kind Regards,
Karen P.

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Hi Terri,

Would you be able to share with me exactly what your husband is taking. I would really appreciate it as it could work for my dad. He is currently taking only Vitamin Bs and is transfusion dependent.

Kind Regards,
Karen P.

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Lu,

I am so sorry to hear about your father. It must be hard for you in this difficult time – keep searching for the beauty in life.

Kind Regards,
Karen P.

[KP2112]

Although I am fairly new to the site, I feel like know Barbra and Ron just from reading their posts. I wish them hope and comfort, you are in my thoughts.

Kind Regards,
Karen P.

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