I have to say that at the end of last weekend I was getting very discouraged. I was taking daily shots of Leukine because my WBC's were down to 3100. I had a reaction of chills, and probably fever once. I was having nausea and almost constant diarrhea. My weight was down. I had no appetite. No food tasted good to me. I understand the need for the radiation, but the symptoms are mostly related to the Taxotere, being given to enhance the effect of radiation, rather than for its chemotherapeutic effect.
Today, I had my 12th of 25 radiation treatments and a visit with Dr. Flam. I also had the third of what I expect to be five infusions of Taxotere. I am feeling substantially better. I attribute this to my bowels returning to some semblance of normalcy. My WBC is up to 4400, not a huge improvement but better. My hemoglobin dropped from 10.9 to 9.9. Because of that, I was given a shot of Procrit, (epoetin alpha), to stimulate the production of red blood cells. Platelets were down slightly from 129,000 to 104,000.
I was feeling so discouraged that I wanted to discuss discontinuing the Taxotere and just going with radiation,but now I feel I can stay the course.
Thanks to Patty at Dr. Flam's office, the issue about the coverage for Carofate has been resolved. Apparently the insurance will only cover one generic brand, and I paid $7 for 3 weeks supply. The pharmacy originally obtained the wrong brand, and I asked what it would be out of pocket. $500. What a messed up system!
Dr. Flam suggested last week when I complained about the logistics of getting everything done suggested I come in at 7:30 AM today. He said I would have my labs done, see him get the infusion started and get to Radiation Therapy by my 8:30 appointment. This would work better than having the radiation first, and then coming to get the labs started after 9:00 in the usual traffic jam it his office. The techs at XRT were skeptical that this could be done and they were right. It all ran together at 8:30 when I was about to leave for XRT and Dr. Flam was ready to see me. Nevertheless, it worked out better than last week.
Judy has been wonderful. This week, she has been transporting Eva, our 10 year old granddaughter to Good Company Players acting camp, for 9:00 AM and picking her up at noon. Today, she woke up to take me to treatment for 7:30, took the dog to the park, picked up Eva to take her to her camp. Later, she picked Eva up and picked me up afterwards, and we had Eva here for most of the afternoon.
Tomorrow, I will drive myself.
Go Giants! It looks like we will get Beltran from the Mets.
Now, if we don't need to use Barry Zito we should have a good shot at a repeat championship.
Wednesday, July 27, 2011
Saturday, July 23, 2011
Not Feeling Well
This has been a difficult week. I have been uncomfortable, probably due to the injections of Leukine. The constipation has disappeared and I am dealing with the opposite problem and with accompanying cramps. Last night I had shaking chills, and about 4:00 AM, the cramps woke me up and my nightshirt was drenched. My appetite and sense of taste are gone. I have to force myself to eat. I discussed the need for further chemo with Dr. John and he encouraged me to stay the course. I am not really convinced that the chemo is useful at this stage, but I plan to stick it out.
Today is my Granddaughter, Bel's second birthday party. I will make a brief appearance.
As to a replacement for Carofate, the generic that CVS found is $300, compared to $60. My insurance does not cover that brand and I can't blame them. They have another supplier which I think will be approved.
Thanks Patty at Dr. Flam's office for your help with this.
Today is my Granddaughter, Bel's second birthday party. I will make a brief appearance.
As to a replacement for Carofate, the generic that CVS found is $300, compared to $60. My insurance does not cover that brand and I can't blame them. They have another supplier which I think will be approved.
Thanks Patty at Dr. Flam's office for your help with this.
Wednesday, July 20, 2011
Not a Good Day Today, + Real Estate Discussion (off topic)
Wednesdays are the day for radiation and chemotherapy. Radiation Oncology and Dr. Flam are in the same complex, owned by St Agnes Hospital. The Oncology group rents space and is an independent entity while Radiation Oncology is owned and run by St. Agnes. Surprisingly, perhaps, the Oncology practice is much less efficient from the patient's point of view.
After my radiation treatment, I arrive for my chemo just after 9:00 AM. the waiting room and the adjacent corridor are filled with patients. I sign in and find a rare empty chair. The folks in the waiting room can talk of nothing except to express their unhappiness about the long wait. It made me feel guilty, because when I worked at a place called "La Clinique Medicale Des Groupes" in Montreal, in an average morning, a total of 25 fluoroscopic examinations were scheduled, with the last usually completed at 1:00 PM, and the latest appointment was 8:30 AM.
At 10:45, they finally call me to the lab, where they weigh me and send me back to the waiting room, because my blood draw is to be from my port. The blood draw and port access was done about 11 AM. I finally get to see Dr. Flam around 11:15. I am told he has 90 patients on the schedule for today.
My lab results are discouraging. the Hemoglobin is stable at 10.9, but my white count has dropped to 3380. My platelet count is not bad at 129,000.
Because of this, I will need shots of Leukine. This is given subcutaneously, for 5 days, after oral Tylenol, 325 mg tabletsx2, and Claritin. Potential side effects are allergic or flu-like reactions, hence the Claritin. and musculoskeletal pain, hence the Tylenol.
There are two areas where the chemo is given. One has about 16 chairs and two rooms with a nursing station between them. It is very busy and noisy, without internet access, and without windows. The second, called "The Clinic" is bright, relatively quiet, and has wireless internet. I ask to go to the clinic, and this is agreed to. However, when I get there, I am sent back because I reported a "Reaction" to the Taxotere last week. The reaction I reported was slight flushing and warmth around my ears. I return to the nursing station just after 11:30, but they have no empty chairs to give me chemo. I am seated at a bench to await an empty chemo chair. By this time, I am uncomfortable, getting hungry, and needing to use the bathroom. I get up and inform the nurses to call me on my cell phone when they have a space for me and that I am going home. We finally agree that I can go home and return around 1 PM.
I go home and have some lunch, and fall asleep for a few minutes. Judy goes to the Pharmacy and gets the Tylenol and Claritin. She also learns that my insurance will not cover the refill on Carafate, and they want $50 for a small bottle which, taken as directed, will last 1 week.
I return for my chemo and injection. I end up home about 3:00 PM.
It is now after 5 PM. I am having some pain in my lower chest and back. I presume this is from the Leukine and not from my esophagus, but I will be very nervous if the pain gets worse. I am also feeling mild nausea. I may need to self-medicate for that.
I have said that when you go to see Dr. Flam, you must park your "Type A" personality at the door and go with the flow. Today, I could not do that. I complained to the nurse, and that's how I learned that he had 90 patients scheduled for today. I complained to Tom Hackett. an associate of Dr. Flam, who looked in on me today, and I complained to Dr. Flam. It was not all useless venting. I learned that they can see me at 7:30 AM, get my labs done, and start the chemo, and then get me to my Radiation treatment with the chemo running. If I wasn't so "Type A", I would never have learned about this.
Next Wednesday, I will be there at 7:30.
Why would Blue Cross deny payment for Carafate? Do they think it would be cheaper than treating me for esophageal perforation? I will try to contact them tomorrow to find the answer to this question.
I am wondering about the plan to have chemo with radiation to enhance the effect of radiation. Is it worth it? Is it going to be any different than if I had radiation alone? If Dr. Nghiem had not endorsed this plan, I think I would quit the chemo. I will talk about this with Dr. John tomorrow morning.
Real Estate Discussion (Off Topic)
We are hoping to move from our large 2 story home into a smaller house on one level with no pool. We have found 2 different homes which were suitable and made offers at what we thought were reasonable amounts. Surprisingly, other buyers came in at higher offers and we did not get the properties. There is an interesting trend in housing here. I called it a "Squeeze". Smaller homes are selling rapidly and values are going up. Larger homes are not selling and values are going down. For those trying to downsize, this is not a good trend. Perhaps the reason is the fear of rising interest rates, either from the stalemate on the government debt ceiling, of from the government printing money causing inflation.
After my radiation treatment, I arrive for my chemo just after 9:00 AM. the waiting room and the adjacent corridor are filled with patients. I sign in and find a rare empty chair. The folks in the waiting room can talk of nothing except to express their unhappiness about the long wait. It made me feel guilty, because when I worked at a place called "La Clinique Medicale Des Groupes" in Montreal, in an average morning, a total of 25 fluoroscopic examinations were scheduled, with the last usually completed at 1:00 PM, and the latest appointment was 8:30 AM.
At 10:45, they finally call me to the lab, where they weigh me and send me back to the waiting room, because my blood draw is to be from my port. The blood draw and port access was done about 11 AM. I finally get to see Dr. Flam around 11:15. I am told he has 90 patients on the schedule for today.
My lab results are discouraging. the Hemoglobin is stable at 10.9, but my white count has dropped to 3380. My platelet count is not bad at 129,000.
Because of this, I will need shots of Leukine. This is given subcutaneously, for 5 days, after oral Tylenol, 325 mg tabletsx2, and Claritin. Potential side effects are allergic or flu-like reactions, hence the Claritin. and musculoskeletal pain, hence the Tylenol.
There are two areas where the chemo is given. One has about 16 chairs and two rooms with a nursing station between them. It is very busy and noisy, without internet access, and without windows. The second, called "The Clinic" is bright, relatively quiet, and has wireless internet. I ask to go to the clinic, and this is agreed to. However, when I get there, I am sent back because I reported a "Reaction" to the Taxotere last week. The reaction I reported was slight flushing and warmth around my ears. I return to the nursing station just after 11:30, but they have no empty chairs to give me chemo. I am seated at a bench to await an empty chemo chair. By this time, I am uncomfortable, getting hungry, and needing to use the bathroom. I get up and inform the nurses to call me on my cell phone when they have a space for me and that I am going home. We finally agree that I can go home and return around 1 PM.
I go home and have some lunch, and fall asleep for a few minutes. Judy goes to the Pharmacy and gets the Tylenol and Claritin. She also learns that my insurance will not cover the refill on Carafate, and they want $50 for a small bottle which, taken as directed, will last 1 week.
I return for my chemo and injection. I end up home about 3:00 PM.
It is now after 5 PM. I am having some pain in my lower chest and back. I presume this is from the Leukine and not from my esophagus, but I will be very nervous if the pain gets worse. I am also feeling mild nausea. I may need to self-medicate for that.
I have said that when you go to see Dr. Flam, you must park your "Type A" personality at the door and go with the flow. Today, I could not do that. I complained to the nurse, and that's how I learned that he had 90 patients scheduled for today. I complained to Tom Hackett. an associate of Dr. Flam, who looked in on me today, and I complained to Dr. Flam. It was not all useless venting. I learned that they can see me at 7:30 AM, get my labs done, and start the chemo, and then get me to my Radiation treatment with the chemo running. If I wasn't so "Type A", I would never have learned about this.
Next Wednesday, I will be there at 7:30.
Why would Blue Cross deny payment for Carafate? Do they think it would be cheaper than treating me for esophageal perforation? I will try to contact them tomorrow to find the answer to this question.
I am wondering about the plan to have chemo with radiation to enhance the effect of radiation. Is it worth it? Is it going to be any different than if I had radiation alone? If Dr. Nghiem had not endorsed this plan, I think I would quit the chemo. I will talk about this with Dr. John tomorrow morning.
Real Estate Discussion (Off Topic)
We are hoping to move from our large 2 story home into a smaller house on one level with no pool. We have found 2 different homes which were suitable and made offers at what we thought were reasonable amounts. Surprisingly, other buyers came in at higher offers and we did not get the properties. There is an interesting trend in housing here. I called it a "Squeeze". Smaller homes are selling rapidly and values are going up. Larger homes are not selling and values are going down. For those trying to downsize, this is not a good trend. Perhaps the reason is the fear of rising interest rates, either from the stalemate on the government debt ceiling, of from the government printing money causing inflation.
Thursday, July 14, 2011
Esophagus Radiation with Chemotherapy Enhancement
This phase of my treatment has begun.
On Tuesday, I went for the first radiation treatment to the mediastinum. New markings covered with tape were placed on my chest. The actual treatments consisted of six short bursts of radiation, with the machine repositioned for each burst so the tumor is shot from many different angles. This is done to reduce the radiation dose to structures near the treatment site. These include my heart, lungs, spine and spinal cord, vagus nerve and liver.
My appointment was for 8:00 AM, but there is a new regulation from Medicare which requires the Radiation Oncologist to be on site during the treatment so it was delayed until after 8:30. The schedule has now been changed so treatments will be at 8:30.
Yesterday, I went for my radiation treatment followed by chemotherapy.
After the treatment, I went to Dr. Flam's office in the same complex, and the waiting room was as crowded as the Los Angeles Freeways will be this weekend. I had my blood drawn. The results are good. Platelets normal at 137,000, White count normal at 4,900, and hemoglobin low but stable at 10.9 g/l.
After a brief visit with Dr. Flam, my treatment began. Through the port, I was first given 32 mg of Zofran over 30 minutes to prevent nausea. then, over the next 2 hours, I received 57 mg of Taxotere. Because this was the first dose, they gave it slowly to make sure I did not have an adverse reaction. The only reaction was some flushing and a slight burning sensation around my ears. I did not get sick but was tired afterwards and was mildly nauseated.
I drove myself home, and rested in the afternoon.
Brian is visiting from Vancouver. Gary and Dana invited us for dinner and I was able to go and eat some BBQ chicken and a hot dog, with a small amount of strawberry pie for dessert, so the nausea was not a factor. I drove there and, being tired, drove myself home before Judy and Brian left.
Today was treatment #3 of 25. There was also a status check with Dr. John. There is nothing much to report about this, but I did ask him if I should show up on time for my 8:30 appointments, because if he was going to be late, so was I. He did admit to having a conference on Thursdays which do not end until 8:45, so I will not rush to be on time on Thursdays.
It looks like the main side effect to be aware of is esophagitis, with possible development of a stricture. (An area of narrowing from scar tissue which can obstruct the movement of food)
As a precaution against this, Dr. Flam wants me to take 20 mg. of Prilosec twice daily and Carafate Suspension, 1 tablespoon after meals and at bedtime. Somehow, my dead taste buds still think it tastes terrible.
Today, I am feeling well, mildly constipated, with no nausea.
I don't expect significant symptoms for the next 2-3 weeks.
On Tuesday, I went for the first radiation treatment to the mediastinum. New markings covered with tape were placed on my chest. The actual treatments consisted of six short bursts of radiation, with the machine repositioned for each burst so the tumor is shot from many different angles. This is done to reduce the radiation dose to structures near the treatment site. These include my heart, lungs, spine and spinal cord, vagus nerve and liver.
My appointment was for 8:00 AM, but there is a new regulation from Medicare which requires the Radiation Oncologist to be on site during the treatment so it was delayed until after 8:30. The schedule has now been changed so treatments will be at 8:30.
Yesterday, I went for my radiation treatment followed by chemotherapy.
After the treatment, I went to Dr. Flam's office in the same complex, and the waiting room was as crowded as the Los Angeles Freeways will be this weekend. I had my blood drawn. The results are good. Platelets normal at 137,000, White count normal at 4,900, and hemoglobin low but stable at 10.9 g/l.
After a brief visit with Dr. Flam, my treatment began. Through the port, I was first given 32 mg of Zofran over 30 minutes to prevent nausea. then, over the next 2 hours, I received 57 mg of Taxotere. Because this was the first dose, they gave it slowly to make sure I did not have an adverse reaction. The only reaction was some flushing and a slight burning sensation around my ears. I did not get sick but was tired afterwards and was mildly nauseated.
I drove myself home, and rested in the afternoon.
Brian is visiting from Vancouver. Gary and Dana invited us for dinner and I was able to go and eat some BBQ chicken and a hot dog, with a small amount of strawberry pie for dessert, so the nausea was not a factor. I drove there and, being tired, drove myself home before Judy and Brian left.
Today was treatment #3 of 25. There was also a status check with Dr. John. There is nothing much to report about this, but I did ask him if I should show up on time for my 8:30 appointments, because if he was going to be late, so was I. He did admit to having a conference on Thursdays which do not end until 8:45, so I will not rush to be on time on Thursdays.
It looks like the main side effect to be aware of is esophagitis, with possible development of a stricture. (An area of narrowing from scar tissue which can obstruct the movement of food)
As a precaution against this, Dr. Flam wants me to take 20 mg. of Prilosec twice daily and Carafate Suspension, 1 tablespoon after meals and at bedtime. Somehow, my dead taste buds still think it tastes terrible.
Today, I am feeling well, mildly constipated, with no nausea.
I don't expect significant symptoms for the next 2-3 weeks.
Tuesday, July 5, 2011
The Plan is Finalized
I quote from my brother Robert. "The reason people retire is so that they will have time to visit doctors."
Between now and August 15, I will have 25 visits for radiation, 5 visits for chemotherapy, 5 evaluations by Dr. Flam, 5 status checks with Dr. John and a visit to by internist, Dr. Holmes. I think I also have a dental check-up coming up.
Today, it was Dr. Flam. You can't escape his office without labs.
The bone marrow suppression from my prior chemo continues.
White count is down from 5900 to 3500, Hemoglobin is down to 10.9 from 11.2. Platelets are still normal but down from 182,000 t0 158,000.
My symptoms are unchanged.
The most troubling is still hearing loss, with a buzzing sound when there is speech, particularly from male voices, including my own. Female voices seem to sound tinny. I hear the sounds, but its like a foreign language, of which I know many words but miss enough to often lose comprehension. The buzzing sound is something I can't find reviewing the web for hearing disorders.
The dry mouth and loss of taste continue.
The plan is to have radiation treatment with chemosensitization. I was reluctant to have 5FU, and the first words from Dr. Flam were "I don't want to give you 5FU." The drug to be used is Taxotere, with a generic name of Docetaxel. This is given at 1/3 of the dose which would be given for its chemotherapeutic effect.
Side effects include anemia, low white count,fluid retention, peripheral neuropathy,nausea, diarrhea, mouth sores,hair loss, fatigue, weakness,and infections. Less common side effects include vomiting,muscle and joint pain, low platelets, and abnormal liver function.
Because I am receiving a relatively low dose, I do not expect the side effects to be severe.
Here are some additional observations.
Since I was diagnosed with Merkel Cell Carcinoma, I have not been sick. No colds or flu.
Since chemotherapy, my patches of eczema, whith I think are probably mild psoriasis have disappeared.
I have lost about 23 pounds, and my cholesterol numbers have improved.
I have great health coverage. So far, between Medicare and Blue Cross, I have paid almost nothing out of pocket for all the care I have received.
I am looking beyond August. Between August 15 and the end of 2011, we have planned a family cruise in December. Judy and I will take a west coast cruise at the end of September.
We will also visit Mike and Leanna, Sammie and Eli, probably in October, and go to Montreal to visit my mother, perhaps on the same trip to the East.
In between, while in Fresno, I hope to work part time. (To pay for all this).
Between now and August 15, I will have 25 visits for radiation, 5 visits for chemotherapy, 5 evaluations by Dr. Flam, 5 status checks with Dr. John and a visit to by internist, Dr. Holmes. I think I also have a dental check-up coming up.
Today, it was Dr. Flam. You can't escape his office without labs.
The bone marrow suppression from my prior chemo continues.
White count is down from 5900 to 3500, Hemoglobin is down to 10.9 from 11.2. Platelets are still normal but down from 182,000 t0 158,000.
My symptoms are unchanged.
The most troubling is still hearing loss, with a buzzing sound when there is speech, particularly from male voices, including my own. Female voices seem to sound tinny. I hear the sounds, but its like a foreign language, of which I know many words but miss enough to often lose comprehension. The buzzing sound is something I can't find reviewing the web for hearing disorders.
The dry mouth and loss of taste continue.
The plan is to have radiation treatment with chemosensitization. I was reluctant to have 5FU, and the first words from Dr. Flam were "I don't want to give you 5FU." The drug to be used is Taxotere, with a generic name of Docetaxel. This is given at 1/3 of the dose which would be given for its chemotherapeutic effect.
Side effects include anemia, low white count,fluid retention, peripheral neuropathy,nausea, diarrhea, mouth sores,hair loss, fatigue, weakness,and infections. Less common side effects include vomiting,muscle and joint pain, low platelets, and abnormal liver function.
Because I am receiving a relatively low dose, I do not expect the side effects to be severe.
Here are some additional observations.
Since I was diagnosed with Merkel Cell Carcinoma, I have not been sick. No colds or flu.
Since chemotherapy, my patches of eczema, whith I think are probably mild psoriasis have disappeared.
I have lost about 23 pounds, and my cholesterol numbers have improved.
I have great health coverage. So far, between Medicare and Blue Cross, I have paid almost nothing out of pocket for all the care I have received.
I am looking beyond August. Between August 15 and the end of 2011, we have planned a family cruise in December. Judy and I will take a west coast cruise at the end of September.
We will also visit Mike and Leanna, Sammie and Eli, probably in October, and go to Montreal to visit my mother, perhaps on the same trip to the East.
In between, while in Fresno, I hope to work part time. (To pay for all this).
Saturday, July 2, 2011
Decision Made
I have heard from Dr. Nghiem. He is encouraging about the plan to enhance the radiation treatment with chemotherapy.
Dr. Podolsky is also encouraging.
I have had my set-up appointment and the treatments will begin on July 12 and continue for 5 weeks.
I have an appointment with Dr. Flam on July 5 to coordinate the chemotherapy.
My skin is marked with black marker ink and the marks are covered with tape. In the first session, July 12, they will place small skin tattoos for accurate targeting of the radiation.
The most feared complications will be related to the esophagus. Esophagitis, perforation and stricture are the most common, but the chance of stricture is less than 20%. It occurs as a late complication as a result of scarring, and can be managed by balloon dilatation.
The set-up includes low resolution CT. I looked at the images which were done with some barium in the esophagus. The residual tumor can not be identified with certainty and I believe it has shrunk since my last CT.
In the meantime, my body has a chance to recover from the chemotherapy. I feel quite good. My taste buds seem to have slightly improved. My mouth remains too dry. No hair has fallen out, but no hair grows on my head.
I have arranged to work at Kaiser on Wednesday morning and hope to be able to work more, both during and after my treatments. I must say I am going somewhat stir-crazy at home.
We are in the process of planning a family cruise in December and I am confident I will be healthy and fit so we can all enjoy it.
Dr. Podolsky is also encouraging.
I have had my set-up appointment and the treatments will begin on July 12 and continue for 5 weeks.
I have an appointment with Dr. Flam on July 5 to coordinate the chemotherapy.
My skin is marked with black marker ink and the marks are covered with tape. In the first session, July 12, they will place small skin tattoos for accurate targeting of the radiation.
The most feared complications will be related to the esophagus. Esophagitis, perforation and stricture are the most common, but the chance of stricture is less than 20%. It occurs as a late complication as a result of scarring, and can be managed by balloon dilatation.
The set-up includes low resolution CT. I looked at the images which were done with some barium in the esophagus. The residual tumor can not be identified with certainty and I believe it has shrunk since my last CT.
In the meantime, my body has a chance to recover from the chemotherapy. I feel quite good. My taste buds seem to have slightly improved. My mouth remains too dry. No hair has fallen out, but no hair grows on my head.
I have arranged to work at Kaiser on Wednesday morning and hope to be able to work more, both during and after my treatments. I must say I am going somewhat stir-crazy at home.
We are in the process of planning a family cruise in December and I am confident I will be healthy and fit so we can all enjoy it.
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