Dr. John, the Radiation Oncologist who will be giving me the treatment for my residual tumor next to the lower esophagus and perhaps extending into the esophagus wants me to have additional chemotherapy to enhance the effect of the radiation.
He proposes Taxotere and possibly also 5-FU. The Taxotere would be given once weekly over about 1 hour in a dose less than if it were to be used as a primary chemotherapeutic drug. The 5-FU would be given as a slow infusion over 3-5 days using a portable pump. These would be given at the same time as the Radiation.
I'm pretty bummed about this development.
I have reached out to Dr. N. and to my friend, Bill Podolsky, who is a Radiation Oncologist for additional opinions.
Planning is to be done Friday and treatment is tentatively set to begin July 11 and to last 5 weeks.
Meanwhile, we are at the Chukchansi Hotel and Casino near Oakhurst about 40 minutes from Fresno.
So far, I am down $80, but Judy is up $55.
Wednesday, June 29, 2011
Tuesday, June 28, 2011
No More Chemo (for now)
Today, I had my appointment with Dr. Flam. Fortunately, I had the report of my CT scan with me, as the office claimed not to have received it. He read the report, and did not ask to look at the images, which I offered, as I had the CD with me. He said that the chemotherapy had accomplished its objectives, and it was time to clean up the residual tumor cells with radiation. Dr. John, the radiation oncologist was in the hall, and I brought him up to date on my case. I think he did not recognize hairless me at first, but I have an appointment for tomorrow at 9:30 AM for simulation and planning.
My labs are good. WBC is 5900, platelets are up to 182,000 and hemoglobin back up to 11.2.
My port was flushed and I have an appointment to see Dr. Flam in 1 month.
Additional discussion with Dr. Flam included the question of what might be available should the tumor come back. He said that he had additional chemotherapeutic regimens which might be effective.
I feel good. The side effects of hearing loss, bad speaker tinnitus and taste loss with dry mouth are still with me. I think I have largely avoided "chemo brain". I hope these side effects go away, although the hearing loss is irreversible.
I am delighted to avoid the expected additional chemotherapy, and I hope to be able to travel in another 6 or 7 weeks.
On the downside, I spoke with Dr. Nghiem yesterday. He was not particularly encouraging about the good response to chemotherapy. He suggested that this is the usual result, but there are most likely cancer cells in my body which would not show up on a circulating Merkel cell assay, and the remission induced by chemotherapy is unlikely to be a cure. He did say that should that be the case, there are experimental protocols for which I would be a good candidate. One using immunotherapy would be particularly promising for me.
In the meantime, I know of 3 cases of Merkel call carcinoma cancer-free after chemotherapy. Audi, Scott Hammond and an additional unnamed patient of Dr. Hackett who is a 10 year surviver.
If you know of others, please post the information.
My labs are good. WBC is 5900, platelets are up to 182,000 and hemoglobin back up to 11.2.
My port was flushed and I have an appointment to see Dr. Flam in 1 month.
Additional discussion with Dr. Flam included the question of what might be available should the tumor come back. He said that he had additional chemotherapeutic regimens which might be effective.
I feel good. The side effects of hearing loss, bad speaker tinnitus and taste loss with dry mouth are still with me. I think I have largely avoided "chemo brain". I hope these side effects go away, although the hearing loss is irreversible.
I am delighted to avoid the expected additional chemotherapy, and I hope to be able to travel in another 6 or 7 weeks.
On the downside, I spoke with Dr. Nghiem yesterday. He was not particularly encouraging about the good response to chemotherapy. He suggested that this is the usual result, but there are most likely cancer cells in my body which would not show up on a circulating Merkel cell assay, and the remission induced by chemotherapy is unlikely to be a cure. He did say that should that be the case, there are experimental protocols for which I would be a good candidate. One using immunotherapy would be particularly promising for me.
In the meantime, I know of 3 cases of Merkel call carcinoma cancer-free after chemotherapy. Audi, Scott Hammond and an additional unnamed patient of Dr. Hackett who is a 10 year surviver.
If you know of others, please post the information.
Thursday, June 23, 2011
Good News!
My CT scan today shows marked improvement from the previous studies.
By comparison, here is the previous axial scan
Most of the soft tissue in the area on the scan today is the distal esophagus.
The coronal images are below.
Here is the previous for comparison.
This is about as much as I could hope for. I await my visit to Dr Flam next Tuesday at which time I expect him to stop all chemotherapy and we can plan some radiation treatment to the area.
The CT scan also shows no evidence of new disease.
I don't want to get my hopes up too high as I have been disappointed before, but I am very optimistic.
I also saw Richard Weinberg today about my hearing loss. He was very accommodating, squeezing me in between his regular appointments. They did a more complete audiogram on me and I have significant high frequency hearing loss. He says a hearing aid would not help at this time and feels that some additional hearing loss would be worth the price if I need additional Cisplatin.
By comparison, here is the previous axial scan
The coronal images are below.
This is about as much as I could hope for. I await my visit to Dr Flam next Tuesday at which time I expect him to stop all chemotherapy and we can plan some radiation treatment to the area.
The CT scan also shows no evidence of new disease.
I don't want to get my hopes up too high as I have been disappointed before, but I am very optimistic.
I also saw Richard Weinberg today about my hearing loss. He was very accommodating, squeezing me in between his regular appointments. They did a more complete audiogram on me and I have significant high frequency hearing loss. He says a hearing aid would not help at this time and feels that some additional hearing loss would be worth the price if I need additional Cisplatin.
Wednesday, June 22, 2011
My Scan Will Be Done Tomorrow
My Scan Will Be Done Tomorrow
Bet your bottom dollar
That tomorrow
I'll be scanned.
Just thinking about tomorrow
It may be a day of sorrow,
Or a day that's grand.
It will be a day that's hot and sunny
This is the test for all the money.
Tomorrow, tomorrow, they'll scan me tomorrow
Tomorrow's the day I'll know.
With apologies to Annie
I had my appointment with Dr Flam today.
Labs are not great, but not terrible.
My platelets are 84,000 up from 80,000.
White count is normal at 6,900, down from 26,800 after Neulasta.
Hemoglobin is down to 10.5 from 11.5 last week.
Symptoms this week are mainly related to my hearing. The audiogram showed a mild high frequency hearing loss. This is manifest especially watching TV, where I can hear dialogue but have difficulty understanding it. This week, a new manifestation showed up. It feels like there is a low frequency tinny sound, accompanying speech like there is a defective speaker on a radio.
Dr Flam wants me to see an ENT specialist. I have called my friend Richard Weinberg who will try to see me tomorrow after my CT.
In any event, Dr Flam says I should not take any more Cisplatin and if more chemotherapy is needed, he will switch to Carboplatin, which causes less ototoxicity, but not none.
It seems like three possible scenarios depending on the CT scan.
1. Best case, the posterior mediastinal mass is gone and there is no new tumor.
The plan for this case is likely radiation treatment to the posterior mediastinum.
2. Most likely. The mass is smaller, or unchanged but there is no new tumor.
Continue chemo with Carboplatin.
3. The mass is bigger, or there is new disease.
Stop chemo. Look for an experimental protocol.
In other news, we had a very nice visit from my brother and sister-in-law from Florida, Jon and Sandy.
They took us out for dinner Monday night. The food was good, so I'm told. As good as could be expected, with loss of taste. On Tuesday, we had brunch with them and with Gary, Dana and the three granddaughters. Then Eva stayed over last night. She leaves for 2 weeks of camp on Sunday.
I hope to post again tomorrow with my results.
Bet your bottom dollar
That tomorrow
I'll be scanned.
Just thinking about tomorrow
It may be a day of sorrow,
Or a day that's grand.
It will be a day that's hot and sunny
This is the test for all the money.
Tomorrow, tomorrow, they'll scan me tomorrow
Tomorrow's the day I'll know.
With apologies to Annie
I had my appointment with Dr Flam today.
Labs are not great, but not terrible.
My platelets are 84,000 up from 80,000.
White count is normal at 6,900, down from 26,800 after Neulasta.
Hemoglobin is down to 10.5 from 11.5 last week.
Symptoms this week are mainly related to my hearing. The audiogram showed a mild high frequency hearing loss. This is manifest especially watching TV, where I can hear dialogue but have difficulty understanding it. This week, a new manifestation showed up. It feels like there is a low frequency tinny sound, accompanying speech like there is a defective speaker on a radio.
Dr Flam wants me to see an ENT specialist. I have called my friend Richard Weinberg who will try to see me tomorrow after my CT.
In any event, Dr Flam says I should not take any more Cisplatin and if more chemotherapy is needed, he will switch to Carboplatin, which causes less ototoxicity, but not none.
It seems like three possible scenarios depending on the CT scan.
1. Best case, the posterior mediastinal mass is gone and there is no new tumor.
The plan for this case is likely radiation treatment to the posterior mediastinum.
2. Most likely. The mass is smaller, or unchanged but there is no new tumor.
Continue chemo with Carboplatin.
3. The mass is bigger, or there is new disease.
Stop chemo. Look for an experimental protocol.
In other news, we had a very nice visit from my brother and sister-in-law from Florida, Jon and Sandy.
They took us out for dinner Monday night. The food was good, so I'm told. As good as could be expected, with loss of taste. On Tuesday, we had brunch with them and with Gary, Dana and the three granddaughters. Then Eva stayed over last night. She leaves for 2 weeks of camp on Sunday.
I hope to post again tomorrow with my results.
Wednesday, June 15, 2011
My Hair's Still There!
My tongue is so dry
To my palate it's stuck
And the taste of food
Makes me want to upchuck
But my hair's still there.
I get so tired
I could sleep on nails.
My skin gets so dry
It's as if I had scales.
But my hair's still there.
For a week, I feel
Like I want to throw up
My colon feels like
It wants to blow up.
But my hair's still there.
I've become so clumsy
And I'm losing my hearing
I question the course
That I've been steering
But my hair's still there.
On the bright side, my doctors
Use every trick
And since I got Merkel's
I haven't been sick.
And my hair's still there.
I shaved it off,
But it didn't fall out.
Yet!
Three more rounds to go.
It will.
I bet.
Actually it is a fact that since I got MCC, I have not even had the sniffles (that weren't caused by allergy).
Yesterday, I visited Dr. Flam for follow-up.
Labs are good.
WBC up to 26,800 due to Neulasta.
Platelets down 166,000 to 80,000. This is still not too bad.
Hgb 11.5 up from 11.0
I have a symptom which has developed slowly and I don't even know if it is related to chemotherapy and that is hearing loss. I can hear sounds, but often cannot make out the words. This is especially so when watching TV. I have been resorting to closed captioning. I had an audiogram yesterday which showed mild hearing loss. We will see if it progresses.
Otherwise I am doing well.
I have a CT scan scheduled 1 week from tomorrow. That will be the moment of truth.
My Granddaughter Eva has donated her hair to Locks of Life, which provides wigs for cancer patients. She has done this in my honor and also in memory of her other grandmother Mary Arechiga, who passed away from the combination of breast cancer and lymphoma.
Here are the photos.
I am so proud!
To my palate it's stuck
And the taste of food
Makes me want to upchuck
But my hair's still there.
I get so tired
I could sleep on nails.
My skin gets so dry
It's as if I had scales.
But my hair's still there.
For a week, I feel
Like I want to throw up
My colon feels like
It wants to blow up.
But my hair's still there.
I've become so clumsy
And I'm losing my hearing
I question the course
That I've been steering
But my hair's still there.
On the bright side, my doctors
Use every trick
And since I got Merkel's
I haven't been sick.
And my hair's still there.
I shaved it off,
But it didn't fall out.
Yet!
Three more rounds to go.
It will.
I bet.
Actually it is a fact that since I got MCC, I have not even had the sniffles (that weren't caused by allergy).
Yesterday, I visited Dr. Flam for follow-up.
Labs are good.
WBC up to 26,800 due to Neulasta.
Platelets down 166,000 to 80,000. This is still not too bad.
Hgb 11.5 up from 11.0
I have a symptom which has developed slowly and I don't even know if it is related to chemotherapy and that is hearing loss. I can hear sounds, but often cannot make out the words. This is especially so when watching TV. I have been resorting to closed captioning. I had an audiogram yesterday which showed mild hearing loss. We will see if it progresses.
Otherwise I am doing well.
I have a CT scan scheduled 1 week from tomorrow. That will be the moment of truth.
My Granddaughter Eva has donated her hair to Locks of Life, which provides wigs for cancer patients. She has done this in my honor and also in memory of her other grandmother Mary Arechiga, who passed away from the combination of breast cancer and lymphoma.
Here are the photos.
I am so proud!
Tuesday, June 7, 2011
Round 3, day 1
We have a plan. It is obviously not set in stone.
Six rounds of chemotherapy. PET/CT before the 4th round. Assuming I have improved, that is the posterior mediastinal mass is smaller and there are no new lesions, Imaging again after the 6th round. Then additional radiation to the site of the posterior mediastinal mass. After chemo and before radiation, a visit to Dr Nghiem and a cruise. I hope I can work out the schedule to take the cruise out of Seattle.
Our 49th Anniversary was June 3. We went to red Lobster to celebrate although Judy has misgivings about the date since my first surgery was done on June 3, one year ago. I must say I was not impressed by the food although I am sure it was in part due to my diminished sense of taste. We received a gift basket of Canadian chocolate bars, maple sugar and shortbread cookies from Gary, Dana and the girls. The Nestle Crunch bars tasted almost as good as I remember them.
I have been feeling pretty good this past week, so I am not looking forward to round 3. It starts with labs and an examination by Dr Flam. My hemoglobin remains at 11 grams. My WBC are 9,900 again normal and my platelets are 166,000. This is also normal. So far I have tolerated everything well, with only complaints of dry mouth, decreased taste and some tenderness of my gums. No hair loss although the hair on my head and my beard are growing only very slowly. I guess I got the buzz cut prematurely. I don't think I am significantly worse today than I was after round 1.
We arrive early, at 8:00 AM. I am done by 3:30 PM.
I am not uncomfortable during the chemo although I am running to the bathroom every 20 minutes towards the end.
About a week ago, Bert, my bridge partner and good friend suffered a stroke. He lost the ability to speak, but no other functionality. He was in the hospital for a few days and is expected to make a full recovery.
I spoke with him on Saturday and he was quite lucid, although he was often still unable to find the words he needed. We had finished first and second the two last times we played bridge. I played with Jill Friday and we won. I played with Byron yesterday and we won.
I will wait to play bridge again probably until a week from Friday, hopefully with Bert.
Our dear friend Bonna came for breakfast on Saturday and she brought us a chicken noodle cheese casserole which we will have for dinner tonight.
Eva slept here Sunday night. She will have her hair cut tomorrow and donated to Locks of Love to make wigs for cancer patients in my honor and also in honor of her grandmother on her mother's side who died of lymphoma and/or breast cancer.
We had dinner with our good friends Carol and Larry Saturday and then they came here to play some bridge. I see significant improvement in their game.
That's the news from here. We are trying to keep busy, but I am not looking forward to the next week.
Go Giants.
Six rounds of chemotherapy. PET/CT before the 4th round. Assuming I have improved, that is the posterior mediastinal mass is smaller and there are no new lesions, Imaging again after the 6th round. Then additional radiation to the site of the posterior mediastinal mass. After chemo and before radiation, a visit to Dr Nghiem and a cruise. I hope I can work out the schedule to take the cruise out of Seattle.
Our 49th Anniversary was June 3. We went to red Lobster to celebrate although Judy has misgivings about the date since my first surgery was done on June 3, one year ago. I must say I was not impressed by the food although I am sure it was in part due to my diminished sense of taste. We received a gift basket of Canadian chocolate bars, maple sugar and shortbread cookies from Gary, Dana and the girls. The Nestle Crunch bars tasted almost as good as I remember them.
I have been feeling pretty good this past week, so I am not looking forward to round 3. It starts with labs and an examination by Dr Flam. My hemoglobin remains at 11 grams. My WBC are 9,900 again normal and my platelets are 166,000. This is also normal. So far I have tolerated everything well, with only complaints of dry mouth, decreased taste and some tenderness of my gums. No hair loss although the hair on my head and my beard are growing only very slowly. I guess I got the buzz cut prematurely. I don't think I am significantly worse today than I was after round 1.
We arrive early, at 8:00 AM. I am done by 3:30 PM.
I am not uncomfortable during the chemo although I am running to the bathroom every 20 minutes towards the end.
About a week ago, Bert, my bridge partner and good friend suffered a stroke. He lost the ability to speak, but no other functionality. He was in the hospital for a few days and is expected to make a full recovery.
I spoke with him on Saturday and he was quite lucid, although he was often still unable to find the words he needed. We had finished first and second the two last times we played bridge. I played with Jill Friday and we won. I played with Byron yesterday and we won.
I will wait to play bridge again probably until a week from Friday, hopefully with Bert.
Our dear friend Bonna came for breakfast on Saturday and she brought us a chicken noodle cheese casserole which we will have for dinner tonight.
Eva slept here Sunday night. She will have her hair cut tomorrow and donated to Locks of Love to make wigs for cancer patients in my honor and also in honor of her grandmother on her mother's side who died of lymphoma and/or breast cancer.
We had dinner with our good friends Carol and Larry Saturday and then they came here to play some bridge. I see significant improvement in their game.
That's the news from here. We are trying to keep busy, but I am not looking forward to the next week.
Go Giants.
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