How do you post to a existing topic

[lindajo]

I was able to post a new topic but I can’t seem to find out how to post to an existing topic with the new format. Lindajo

[admin1]

The Reply buttons have been enabled. Sorry, they were hidden during the upgrade.

[Jo L.]

Thank you for fixing the forum so we could add replies. The old MDS Forum was like an old friend, easy to work with and comfortable to be around. It was unsettling to come here and find everything changed. Just as we have adapted to our lives – with the never ending challenges of living with MDS – I am sure we can adapt to a few cosmetic changes. It is worth it so we can interact with our friends facing similar challenges.

Jo L.

[Mary4Mike]

Jo L.

I am sorry to read about your husband John’s diagnosis of cancer of the trachea. Is it at all related to the MDS or treatments he has taken for MDS? I really doubt if they would admit it or maybe they don’t even know.

If I remember right, wasn’t your husband the one who suffered terrible headaches? Has that problem resolved?

Please explain photodynamic therapy.

You and John are in my prayers. Take care of yourself.

[Jo L.]

Mary –
Thank you for your concern. We were pretty devastated when we learned of the new cancer in John’s trachea. He had been spitting up blood sporadically since October and had undergone many chest x-rays, CT scans and bronchoscopes, with no clear diagnosis of what was wrong. Dec 17 the results of biopsies came back as cancer of trachea, vocal cords & epiglottis. We don’t know if it is Dacogen related, although he would always have a sore throat the second week after treatment, right before the nadir week and the very bad headaches. Did the Dacogen weaken the tissue each cycle, leaving the area more susceptible to attack? Will we ever know the answer?

Our oncologist advised against surgery, saying John would most likely not be able to recover from removal of trachea and vocal cords. Radiation was suggested, but John’s experience with it during his first throat cancer 10 years ago made him unwilling to try it again. (He vomited constantly for 8 weeks, lost his salivary glands & taste buds, had serious scar tissue develop and we believe his MDS was the result of those radiation treatments.) So our ENT suggested Photodynamic Therapy.

A very brief description – a photoreactive drug is injected which gets taken up by the cancer cells. A special laser light is shone on the cancer cells. The light activates the drug, forming a special oxygen which kills the cancer cells.

For the long explanation:
http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic

It sounded very "Star Trek" technology when we first heard about it. And as things normally are – it wasn’t as easy as it was made to sound. The procedure went fine, but it caused major inflammation in John’s throat, so he ended up in ICU on a ventilator, and now a tracheostomy until he can breathe on his own. The good news, the pathology reports from subsequent bronchoscopies show the cancer is dying from the treatments.

For the year John was on Dacogen, I was always praying that it would keep him at a point where he could live until they found a real cure for MDS. We never expected this other bombshell to hit.

Sorry for the long reply to your question. Sometimes it just helps to talk about it.

Jo L.

[Mary4Mike]

Jo L,

Thanks for your response and explanation. This new treatment sounds very promising. I will definately pray for a good outcome to all of this.

Mike never experienced a sore throat with Dacogen, however, his voice always got strange…..kind of weak. This usually coincided with his nadir.

Mike just finished another round of Dacogen on Friday. His last round was in October. He is still needing TXs on a monthly basis, but I have to admit that there has been a vast improvement in his overall well being. He is more upbeat and seems to feel like doing things again. He has been like this since October. He had a BMB the first part of January and it showed no progression of disease (his last BMB was September 05). His doc has put him on a maintenance dose of Dacogen every 2 to 3 months.

One day at a time, Jo L. Thank God, that is all we have to handle at a time.

Sorry for MY long response. Yes, sometimes it just helps to talk about it. I am grateful for this forum.

Take care and post again when you feel like "talking".

Mary

[Author]

Posts