Hello All - this is Cathy, Tom's sister, making the update for him. Tom met with Dr. Sherry for a check on his progress and then received his 3rd round of chemotherapy at the cancer center today.
Dr. Sherry was optimistic after seeing Tom saying he looked more robust than 2 weeks ago and he noticed the swelling in the jaw had lessened. He also checked the rash which is a side effect of the chemo. Tom has red and itchy spots on his nose, forehead, scalp and chest. Dr. Sherry was happy to see that the rash was contained to the upper body and rated it a 1 out of 4 (4 being the worst case). He indicated that other patients had more severe cases of this rash covering their entire body and most of them had to stop the treatment. This is the same rash Tom had with the chemo treatments last year in Phoenix so he began using the prescription creme left over from then to help lessen the symptoms. The chemo regimen has him receiving taxotere 3 out of 4 weeks every month. He will receive erbitux every week of the month. Dr. Sherry says the erbitux is a biologic that impedes the epidermic growth. The monthly regimen will continue as long as the effects of the treatment are not worse than the disease. After 2-3 months of treatment the doctor will order scans to determine if there is an impact on the disease.
Tom also had some vomiting and diarrhea earlier this week but that has since subsided. This did not stop him from playing the weekly round of golf with Dad on Thursday. He continues to stay as busy as possible with various activities around the house and yard.
Tom's level of pain was checked ... today it was 4 of 10, last Saturday it was 2, and 2 weeks ago it was 7. As the doctor recommended, Tom had increased the number of times he takes the morphine to 6 times per day. This does seem to help but it varies from day to day. Dr. Sherry suggests we double the fentanyl patch and then 8 - 10 hours later begin reducing the amount of morphine. Reducing the amount of narcotics is preferred as long as the increased fentanyl provides similar relief.
A culture from his mouth was taken today as he developed some type of infection on his tongue. Dr. Sherry feels it is topical and can be treated with antibiotics.
Friday, June 26, 2009
Sunday, June 14, 2009
Finally, fighting back!
After what seemed to be eternity, I finally began treatments this past Thursday in a final attempt to slow if not stop the progression of the Cancer I have been battling the past 2 years.
We first met with Dr. Michael Sherry, Oncologist at the UPMC West facility for a brief consultation before the start of treatment, at which time he reviewed the reports of the CT Scan that had been done the previous Monday. The only finding that had never been revealed to me before, but had been there since my birth, was that I was born with two spleens! Not that it will help me in any way, but just a side note I thought worth mentioning. Everything else was pretty much the same as previous scans, soft tissue masses of various sizes here and there throughout my lungs and neck, nothing could be excluded nor could anything be confirmed as far as the squamous cells are concerned.
The nurses at UPMC failed to provide me with the necessary pre-meds required 24 hours before administering of the one drug, resulting in a two day treatment instead of both drugs being administered in one day. No big deal there either, as both days were under 6 hours each in total time spent there.
I have had no side effects as of yet but that is not unusual as it could take several days if not several treatments before these kick in. Dr. Sherry is trying to make sure that the treatment is not worse than the cancer. Also, in our consultation he went over the pain management regimen I was on and suggested that I may have been under medicating myself and suggested increasing the dosage of morphine I am taking to keep things under control. Not so much the dosage but the frequency. I was taking the morphine 3 to 4 times a day and Dr. Sherry suggested I try increasing it to 5 - 6 times a day and if we see less of a roller coaster pattern in regards to the pain then he will increase the strength of the Fentanyl pain patch I wear from 50 MCG/HR to 100 MCG/HR.
Yesterday, the swelling in my face was way down, and my tongue felt as though it had decreased its swelling as well and I was able to brush my teeth and gums with much more ease than in the past.
I continue to keep myself busy outside in the beautiful summer weather by cleaning the garage, maintaining the yard, cleaning and tuning all the small engine equipment we have, splitting logs and hauling them up to the house to burn in the cool evenings in the Chiminea, planting and caring for my tomatoes and roses and slowly replacing the dead grass in the front lawn, after first cleaning the soil (sifting out debris), then testing and adjusting the PH, Potash, Nitrogen and Phosphorus levels to ensure maximum growth after all the backbreaking work. Oh and then there are the practice rounds of chipping 30 to 50 golfs balls daily to try and keep my game in as good a shape as possible. So for now, this has been the best week I have had yet since coming home.
My eating continues to improve and I am getting more creative with the additions to the bland liquid nutrition that I consume for every meal in an effort to prevent it from becoming to mundane. I've incorporated Bananas, cinnamon and green foods into my menu, not all of these in the same meals, but just to mix things up. I am also consulting my juicing books to see what else I can conjure up that would be both tasteful and healthy in my on going fight against this disease in hopes of getting the upper hand and sending it back into a state of remission, hopefully forever!
My next treatment is for next Friday, so I will probably not post again until sometime after that treatment unless circumstances arise that warrant otherwise.
Many thanks again for all the cards, prayers and messages sent my way via, Dad, Cathy, phone calls and the Interent, they are all appreciated!
We first met with Dr. Michael Sherry, Oncologist at the UPMC West facility for a brief consultation before the start of treatment, at which time he reviewed the reports of the CT Scan that had been done the previous Monday. The only finding that had never been revealed to me before, but had been there since my birth, was that I was born with two spleens! Not that it will help me in any way, but just a side note I thought worth mentioning. Everything else was pretty much the same as previous scans, soft tissue masses of various sizes here and there throughout my lungs and neck, nothing could be excluded nor could anything be confirmed as far as the squamous cells are concerned.
The nurses at UPMC failed to provide me with the necessary pre-meds required 24 hours before administering of the one drug, resulting in a two day treatment instead of both drugs being administered in one day. No big deal there either, as both days were under 6 hours each in total time spent there.
I have had no side effects as of yet but that is not unusual as it could take several days if not several treatments before these kick in. Dr. Sherry is trying to make sure that the treatment is not worse than the cancer. Also, in our consultation he went over the pain management regimen I was on and suggested that I may have been under medicating myself and suggested increasing the dosage of morphine I am taking to keep things under control. Not so much the dosage but the frequency. I was taking the morphine 3 to 4 times a day and Dr. Sherry suggested I try increasing it to 5 - 6 times a day and if we see less of a roller coaster pattern in regards to the pain then he will increase the strength of the Fentanyl pain patch I wear from 50 MCG/HR to 100 MCG/HR.
Yesterday, the swelling in my face was way down, and my tongue felt as though it had decreased its swelling as well and I was able to brush my teeth and gums with much more ease than in the past.
I continue to keep myself busy outside in the beautiful summer weather by cleaning the garage, maintaining the yard, cleaning and tuning all the small engine equipment we have, splitting logs and hauling them up to the house to burn in the cool evenings in the Chiminea, planting and caring for my tomatoes and roses and slowly replacing the dead grass in the front lawn, after first cleaning the soil (sifting out debris), then testing and adjusting the PH, Potash, Nitrogen and Phosphorus levels to ensure maximum growth after all the backbreaking work. Oh and then there are the practice rounds of chipping 30 to 50 golfs balls daily to try and keep my game in as good a shape as possible. So for now, this has been the best week I have had yet since coming home.
My eating continues to improve and I am getting more creative with the additions to the bland liquid nutrition that I consume for every meal in an effort to prevent it from becoming to mundane. I've incorporated Bananas, cinnamon and green foods into my menu, not all of these in the same meals, but just to mix things up. I am also consulting my juicing books to see what else I can conjure up that would be both tasteful and healthy in my on going fight against this disease in hopes of getting the upper hand and sending it back into a state of remission, hopefully forever!
My next treatment is for next Friday, so I will probably not post again until sometime after that treatment unless circumstances arise that warrant otherwise.
Many thanks again for all the cards, prayers and messages sent my way via, Dad, Cathy, phone calls and the Interent, they are all appreciated!
Sunday, June 7, 2009
More Disappointments
Okay, so last week we finally had my appointment at UPMC's Hillman Cancer Center in Shadyside, a suburb of downtown Pittsburgh. After the usual new patient registration process, we met with the Physicians Assistant, Trevor Fieldstein, who reviewed with us the records that UPMC had received from the Mayo Clinic in Arizona, basically covering everything from the start of my journey back in July 0f 2007. After that we then met with Athanassios Argiris, the Oncologist who would be overseeing my treatment at the Hillman. Dr. Argiris advised us that there were currently no Clinical Research Studies open for enrollment and he suggested I begin already established treatments to slow the progress of my cancer. Needless to say I was quite disappointed about the Clinical Studies, as had I know this, we could've begun the other treatments far earlier, instead of giving the cancer a three week head start with no resistance whatsoever to stop or slow the progression of the disease. After some discussion as to whether to begin the treatment at this new facility in Shadyside or revert back to the UPMC West facility closer to our house it was decided that we would return to where we began, as they could administer the treatment at either facility with equal quality and results, so the deciding factor was time and distance.
So a baseline CT Scan has been scheduled for 4:30 p.m. this Monday, June 8th, with a follow-up and hopefully first full treatment for this Thursday June 11th. These should be once a week treatments for 2 cycles, each cycle being 4 weeks, after which more scans would be done to see if the treatments are yielding any results.
I asked Dr. Argiris about future clinical studies and he said he would put me on a waiting list, should any become available while I'm undergoing the current treatment.
So, for now, I've learned to better manage my pain with the medications from the Palliative Care Dr's. My nutritional intake and weight have seem to have stabilized as I seem to have more energy and a desire to get out and do things, although I'm sure the treatments may change that somewhat, but I'll continue to do what I can for as long as I can.
On a good note, the nutritionist we met with was able to secure a vendor to supply the nutritional liquid required for my tube feeding and made arrangements so there would be no cost to me. This is a huge cost savings to me for which I am truly grateful as his can become quite expensive over an extended period of time.
We lastly met with our Collaborative Practice Nurse, Terri Collins, who resides in Aliquippa, Pa. and she is the go to person should I ever need to get a hold of Dr. Argiris. She was very helpful, informative and pleasant to deal with, stressing that if we ever need anything to not hesitate and call her with any issues and if she couldn't take care of it or get the answer, she wold find out who could. She seems to be a real go getter.
So with that, other than speaking, I've been feeling pretty good. My lower face and jaw continue to swell on both sides whether it be from lymph fluid back-up or the spread of the disease, but it is visually noticeable, and I still have constant pain in that area, even with the different pain medications that I am on.
Both my Dad and sister Cathy attended this appointment, for which I am grateful to both of them, as they more often than not think to ask questions that I do not.
Prior to this appointment, Dad and I attended game 3 of the Stanley Cup Finals in which the Pittsburgh Penguins defeated the Detroit Redwings 4-2. Many thanks to brother-in-law Darren for securing the tickets, and to Karen, Mike, Cathy, Darren, Teresa & Steve who gave the tickets to us as a gift. It was an awesome time and I will be posting a few pics from the game as soon as I get them developed.
So a baseline CT Scan has been scheduled for 4:30 p.m. this Monday, June 8th, with a follow-up and hopefully first full treatment for this Thursday June 11th. These should be once a week treatments for 2 cycles, each cycle being 4 weeks, after which more scans would be done to see if the treatments are yielding any results.
I asked Dr. Argiris about future clinical studies and he said he would put me on a waiting list, should any become available while I'm undergoing the current treatment.
So, for now, I've learned to better manage my pain with the medications from the Palliative Care Dr's. My nutritional intake and weight have seem to have stabilized as I seem to have more energy and a desire to get out and do things, although I'm sure the treatments may change that somewhat, but I'll continue to do what I can for as long as I can.
On a good note, the nutritionist we met with was able to secure a vendor to supply the nutritional liquid required for my tube feeding and made arrangements so there would be no cost to me. This is a huge cost savings to me for which I am truly grateful as his can become quite expensive over an extended period of time.
We lastly met with our Collaborative Practice Nurse, Terri Collins, who resides in Aliquippa, Pa. and she is the go to person should I ever need to get a hold of Dr. Argiris. She was very helpful, informative and pleasant to deal with, stressing that if we ever need anything to not hesitate and call her with any issues and if she couldn't take care of it or get the answer, she wold find out who could. She seems to be a real go getter.
So with that, other than speaking, I've been feeling pretty good. My lower face and jaw continue to swell on both sides whether it be from lymph fluid back-up or the spread of the disease, but it is visually noticeable, and I still have constant pain in that area, even with the different pain medications that I am on.
Both my Dad and sister Cathy attended this appointment, for which I am grateful to both of them, as they more often than not think to ask questions that I do not.
Prior to this appointment, Dad and I attended game 3 of the Stanley Cup Finals in which the Pittsburgh Penguins defeated the Detroit Redwings 4-2. Many thanks to brother-in-law Darren for securing the tickets, and to Karen, Mike, Cathy, Darren, Teresa & Steve who gave the tickets to us as a gift. It was an awesome time and I will be posting a few pics from the game as soon as I get them developed.
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