One kick after another

Christine135

So today we saw the new Pulmonologist who spent over an hour with us going over Mike's CT scans from Wednesday as well as his results from his spirometry test which shows his lung air level is 41%. It appears Mike has a few factors that are contributing to his breathing issues. On top of having Stage 4 reoccuring EC is he was diagnosed with Stage 3 emphysema, air in the lining of the lungs, more so on his left side which is leaking into his chest scar tissue from radiation and chemo and the more powerful chemo he had at the end of last month. We can not rule out that the cancer has spread to his lungs so hoping the chest xrays will tell more but for now chemo has been put on hold until his breathing improves but there is no guarantee that will happen. He was put on Prednisone four times a day for one week, then each week after we cut down by 1 pill with follow up with the pulmonologist. We have to go weekly for chest xrays to watch the air in the lungs and chest and if it gets worse, then a chest tube will be put in to drain the air out but once again there is no guarantee that draining the air will help his breathing. So discouraging to hear this but at least we now have a few puzzle pieces together and we can grasp what is going on..just more kicks in the gut..  

LauraandLarry

If I could hug you I would

Wow what a sad day on this board. Christine you are always such an inspiration with your kind encouragement to everyone. As long as the prednisone is tolerated, it should relieve his breathing quite a bit. I hope this is the case for him. Prayers.

callerid

Setback

Christine

So sorry to hear about this latest setback. Hopefully the steroids will kick in and relieve his breathing difficulties. I don't recall if you ever mentioned where he was being treated. Have you considered another consult?

Christine135

callerid said:

Setback

Christine

So sorry to hear about this latest setback. Hopefully the steroids will kick in and relieve his breathing difficulties. I don't recall if you ever mentioned where he was being treated. Have you considered another consult?

We are in Rochester NY

Hi callerid,

We are being treated at the Wilmont Cancer Center at the University of Rochester, Strong Memorial Hospital. Our surgeon is Dr. Jeffrey Peters who is one of the top two esophageal surgeons in the county. When we first learned of Mike's cancer in 2012, I called Cancer Center of America, all of their locations and when I asked if they knew of Dr. Peters the answer was yes and we were in great hands. Once doctor even went as far to say and I quote" As much as I would love to be your physican and have your business, there is no need for you to uproot your family and come here. You have the very best in the field." Our medical staff from the top dog, Dr. Peters right down to the maintenance staff have been out of this world and we have never had to fight for an appointment or phone calls go unanswered. We were seeing a differnt pulmonogist at another hospital and left him because he neglected to tell us the CT scan from May 2013 clearly showed the emphysema whereas the pulmonologist at Strong picked it out immediately and it was confirmed on the CT scan written report. So now we will see what next week's chest xray shows and then go from there. We meet with our Oncologist next week as well to determine if chemo will still be an option but if it is, that may be down the road for there is no guarantee Mike's breathing will improve and unless it does, chemo is on hold. 

Christine135

LauraandLarry said:

If I could hug you I would

Wow what a sad day on this board. Christine you are always such an inspiration with your kind encouragement to everyone. As long as the prednisone is tolerated, it should relieve his breathing quite a bit. I hope this is the case for him. Prayers.

A hug would be have been great

Thank you Laura and just knowing that if we were face to face, the hug would be offered. We hope that the Prednisone will help with the breathing but as we were told, there are other factors that come into play that Mike's breathing may never correct itself. It is possible that there is cancer in the lungs and other places in the body but we have to piick and choose what procedures we do because of Mike's physical health and weight and pray for a miracle that helps. 

LauraandLarry

Christine135 said:

A hug would be have been great

Thank you Laura and just knowing that if we were face to face, the hug would be offered. We hope that the Prednisone will help with the breathing but as we were told, there are other factors that come into play that Mike's breathing may never correct itself. It is possible that there is cancer in the lungs and other places in the body but we have to piick and choose what procedures we do because of Mike's physical health and weight and pray for a miracle that helps. 

Just a note

Christine, I may be wrong but I believe that certain chemo drugs lose the effect if given with Prednisone. Make sure to ask if they decide to move forward with treatment. When Larry's treatment was delayed, they gave him Prednisone, which they said he could not have during chemo. That was Cistplatin and 5FU. They did however give some steroid when they loaded up his fanny pack for the 48 hour infusion. Just thought I would mention it. It sounds like you are in good hands. Still praying!

Christine135

LauraandLarry said:

Just a note

Christine, I may be wrong but I believe that certain chemo drugs lose the effect if given with Prednisone. Make sure to ask if they decide to move forward with treatment. When Larry's treatment was delayed, they gave him Prednisone, which they said he could not have during chemo. That was Cistplatin and 5FU. They did however give some steroid when they loaded up his fanny pack for the 48 hour infusion. Just thought I would mention it. It sounds like you are in good hands. Still praying!

Laura

You are correct, many chemo drugs can not be taken when on Prednisone and since chemo is off the table at the moment, Mike is on a short round of Prednisone to see if this will help him breathe a little easier. Mike was on the 5FU and Cistplatin but only had one round so far but we are seeing our Oncolgist next week to determine if chemo can be continued or if the breathing issues will take chemo off the table for good. Thanks for mentioning this. 

eternalife

Christine135 said:

We are in Rochester NY

Hi callerid,

We are being treated at the Wilmont Cancer Center at the University of Rochester, Strong Memorial Hospital. Our surgeon is Dr. Jeffrey Peters who is one of the top two esophageal surgeons in the county. When we first learned of Mike's cancer in 2012, I called Cancer Center of America, all of their locations and when I asked if they knew of Dr. Peters the answer was yes and we were in great hands. Once doctor even went as far to say and I quote" As much as I would love to be your physican and have your business, there is no need for you to uproot your family and come here. You have the very best in the field." Our medical staff from the top dog, Dr. Peters right down to the maintenance staff have been out of this world and we have never had to fight for an appointment or phone calls go unanswered. We were seeing a differnt pulmonogist at another hospital and left him because he neglected to tell us the CT scan from May 2013 clearly showed the emphysema whereas the pulmonologist at Strong picked it out immediately and it was confirmed on the CT scan written report. So now we will see what next week's chest xray shows and then go from there. We meet with our Oncologist next week as well to determine if chemo will still be an option but if it is, that may be down the road for there is no guarantee Mike's breathing will improve and unless it does, chemo is on hold. 

Pulmonary issues

Sorry to hear about the disruption, the pulmonary issues are currently having on progress. My husband like yours was diagnosed a stage iv EC , Dec. 2011, he has recently had rapid heart beats, however the tests showed no abnormalities. He too was on 5FU and cisplatin. He has just completed radiation with Taxol and we will have to wait for a scan in early July to determine if the cancer resides only in his esophagus, the distal sites were arrested according to the last scan in May.

Trying to stay positive and recommend you continue to do the same. This darn cancer has the caregivers always in a state of questioning and worry. If our husbands only knew how much agony we go through.

Best to you and yours,

Dad'sfight

Its never ending....I can't
Its never ending....I can't imagine breathing issues on top of everything else. Its horrible to watch our loved ones go through this. Im at a loss of words...We'll be praying for you both.