Yesterday was another visit with Dr. Flam. I was his first patient and things ran like clockwork.
My labs were encouraging. WBC is still slightly low at 4200. Platelets are still slightly low at 101,000, but hemoglobin is up to 11.9 grams. I am feeling much better. My taste buds are recovering, but my mouth is still dry. The candida has almost disappeared. I have to brush by tongue 2-3x daily. It makes me gag. I still have hearing loss which I am afraid will be permanent but I have a follow-up ENT appointment. I have mild peripheral neuropathy, manifest by slight numbness, dry skin and clumsiness. I guess I should be grateful there is no associated pain. I hope it gets better, but I am not optimistic. Vitamin B complex does not seem to make a difference.
The good news is that I have made new travel plans.
Montreal, October 10-15. I will combine a visit to my mother, my brother and family and old friends, Bluma and Lenny, with Mcgill class reunions, 50 years from undergraduate, and 45 years from medical school. Judy will not be accompanying me on this trip.
Plans previously made include Philadelphia Sept. 9-15 and our coastal cruise September 24-Oct 1.
When I get back after Oct 15, the moment of truth will be upon me. That is a follow-up PET/CT.
Wednesday, August 31, 2011
Thursday, August 25, 2011
Substantial Improvement Since my Last Post
Last Tuesday, I had a brief visit with the nurse. My labs are still not great, but my Hemoglobin is up to 11gm from 9.9. My white count and platelets are slightly low. I have been off parenteral nutrition since last Saturday morning and have begun eating much better. I am still losing weight but I suspect much of that as retained fluid. My taste buds are improving daily. Last night I had a small steak and it tasted like, well, you know, steak!
The white coating on my tongue has improved, but not disappeared, so I renewed my prescription for the lozenges for another 10 days.
I definitely have more energy. I hope I am not going to overdo things, but I have decided to accompany Judy to Philadelphia on September 9 to visit Mike and Leanna and our grandchildren Sammi and Eli.
Pet/CT in about 2 months.
Visit to Dr Flam next Tuesday.
After we get back from our coastal cruise on Oct 1, I will plan a visit to Montreal to see my mother who continues to lose weight.
The white coating on my tongue has improved, but not disappeared, so I renewed my prescription for the lozenges for another 10 days.
I definitely have more energy. I hope I am not going to overdo things, but I have decided to accompany Judy to Philadelphia on September 9 to visit Mike and Leanna and our grandchildren Sammi and Eli.
Pet/CT in about 2 months.
Visit to Dr Flam next Tuesday.
After we get back from our coastal cruise on Oct 1, I will plan a visit to Montreal to see my mother who continues to lose weight.
Thursday, August 18, 2011
My 71st Birthday Photo
Wednesday, August 17, 2011
Status After Final Radiation Treatment
My last radiation treatment was Monday, Aug 15. Take me out of the oven. I'm all done. My esophagus is cooked. In fact it feels like it was burned.
Yesterday was my visit to Dr. Flam. See the rant below.
My labs were OK except for my Hemoglobin which was 9.8. I needed another shot of Procrit, which insurance wouldn't pay for as the appointment was 6 days and not 7 days after my last shot. No big deal. I had that done today.
I have gained 4-5 pounds since my last appointment and we agreed to stop the TPN, tapering it off with the last treatment on Friday night. Saturday morning, I get to remove the Huber needle myself and will have just skin covering my port.
I have had some burning in my esophagus and heartburn at night. This should resolve as my esophagus heals. Food still has no taste. I seem to have a form of anorexia nervosa.
My tongue was white and Dr. Flam diagnosed Candidiasis (Thrush). He put me on Mycelex, Generic.
It comes in "lozenges", which are actually white chalky pills to be sucked until they dissolve, three times daily. Surprisingly, they are not as obnoxious as they look. Perhaps getting rid of the candida will help restore my sense of taste.
I have no ankle or foot swelling. My blood sugars have been behaving, as I have been self-testing as required 3 times daily.
I have been drinking up to 3 bottles of Boost Plus daily and eating a small amount in addition.
I have noticed that my hands are always dry and there is slight numbness in my fingers. I have become clumsy, dropping things and with slight tremor with small motor tasks. (Including typing this). This seems to be a mild peripheral neuropathy as a result of the chemo. I think I have similar but less obvious neuropathy in my feet. Dr. Flam told me to take Vitamin B complex for this but I doubt this will make a difference, as I have been taking multivites all along and vitamins are added to the TPN. Nevertheless, it couldn't hurt.
Dr. Flam offered two possible plans for follow-up. CT in 1 month if I absolutely had to know if all this worked as soon as possible. PET/CT in 2 months as the PET would not be accurate because of residual inflammation in 1 month. I prefer to wait until after our cruise at the end of September so will have the PET/CT in mid October.
Meanwhile I see the nurse in 1 week and Dr. Flam in 2 weeks.
Sunday afternoon, we had the Fresno Shusters for birthday cake to celebrate Judy's birthday. That was a nice distraction.
Last night I went to our monthly poker game, It was great to get out even with the TPN running. I left early, ahead by 80 cents. Before I left, I had a small slice of Mary Callender Lemon pie. It tasted like they forgot to put the sugar in it.
Friday, I plan to return to the Bridge Club.
Here is the rant.
My appointment was for 10 AM. At 11, I was weighed. At 11:50, I was called back for the nurse to draw blood from my port and replace the Huber needle. I was not seen by Dr. Flam until 1:30, and did not get out of the office until close to 2:00 PM.
Late in the afternoon, Judy went to pick up the prescription, which was supposed to have been called in to the pharmacy. They didn't have it.
There were many patients grumbling in the waiting room, some very sick and waiting to have chemotherapy.
There has to be a better way. Even the Cheesecake Factory gives pagers to those waiting for a table.
In Dr. Flam's defense, his Physician's Assistant recently left and has not yet been replaced, and he was seeing about 100 patients that day. I pointed out to him that the waiting times were excessive, and he shrugged it off to being very busy. He gave instructions for me to be the first patient of the day when I see him in 2 weeks. This does not change the fact that the office could be organized to reduce waiting times for all.
Yesterday was my visit to Dr. Flam. See the rant below.
My labs were OK except for my Hemoglobin which was 9.8. I needed another shot of Procrit, which insurance wouldn't pay for as the appointment was 6 days and not 7 days after my last shot. No big deal. I had that done today.
I have gained 4-5 pounds since my last appointment and we agreed to stop the TPN, tapering it off with the last treatment on Friday night. Saturday morning, I get to remove the Huber needle myself and will have just skin covering my port.
I have had some burning in my esophagus and heartburn at night. This should resolve as my esophagus heals. Food still has no taste. I seem to have a form of anorexia nervosa.
My tongue was white and Dr. Flam diagnosed Candidiasis (Thrush). He put me on Mycelex, Generic.
It comes in "lozenges", which are actually white chalky pills to be sucked until they dissolve, three times daily. Surprisingly, they are not as obnoxious as they look. Perhaps getting rid of the candida will help restore my sense of taste.
I have no ankle or foot swelling. My blood sugars have been behaving, as I have been self-testing as required 3 times daily.
I have been drinking up to 3 bottles of Boost Plus daily and eating a small amount in addition.
I have noticed that my hands are always dry and there is slight numbness in my fingers. I have become clumsy, dropping things and with slight tremor with small motor tasks. (Including typing this). This seems to be a mild peripheral neuropathy as a result of the chemo. I think I have similar but less obvious neuropathy in my feet. Dr. Flam told me to take Vitamin B complex for this but I doubt this will make a difference, as I have been taking multivites all along and vitamins are added to the TPN. Nevertheless, it couldn't hurt.
Dr. Flam offered two possible plans for follow-up. CT in 1 month if I absolutely had to know if all this worked as soon as possible. PET/CT in 2 months as the PET would not be accurate because of residual inflammation in 1 month. I prefer to wait until after our cruise at the end of September so will have the PET/CT in mid October.
Meanwhile I see the nurse in 1 week and Dr. Flam in 2 weeks.
Sunday afternoon, we had the Fresno Shusters for birthday cake to celebrate Judy's birthday. That was a nice distraction.
Last night I went to our monthly poker game, It was great to get out even with the TPN running. I left early, ahead by 80 cents. Before I left, I had a small slice of Mary Callender Lemon pie. It tasted like they forgot to put the sugar in it.
Friday, I plan to return to the Bridge Club.
Here is the rant.
My appointment was for 10 AM. At 11, I was weighed. At 11:50, I was called back for the nurse to draw blood from my port and replace the Huber needle. I was not seen by Dr. Flam until 1:30, and did not get out of the office until close to 2:00 PM.
Late in the afternoon, Judy went to pick up the prescription, which was supposed to have been called in to the pharmacy. They didn't have it.
There were many patients grumbling in the waiting room, some very sick and waiting to have chemotherapy.
There has to be a better way. Even the Cheesecake Factory gives pagers to those waiting for a table.
In Dr. Flam's defense, his Physician's Assistant recently left and has not yet been replaced, and he was seeing about 100 patients that day. I pointed out to him that the waiting times were excessive, and he shrugged it off to being very busy. He gave instructions for me to be the first patient of the day when I see him in 2 weeks. This does not change the fact that the office could be organized to reduce waiting times for all.
Thursday, August 11, 2011
Into The Home Stretch. Review. Details of TPN
I have only two more radiation treatments to go. It will be all over on Monday.
To recap, I originally found a lump in my face on the left in front of my left ear. There was also a small nodule in my left parotid (salivary) gland. Surgery and imaging showed one or two involved lymph nodes in my neck on the left.
After the surgery, I had radiation treatment only to the area of involvement. At that time, I was advised that the chance of complete eradication of the local disease was 80%. However, there was a 50-50 chance that the disease would appear elsewhere. If fact, I was on the wrong side of those odds, and the disease reappeared as a mass adjacent to my lower esophagus. An experimental treatment of a low dose of radiation was attempted in the hopes of stimulating my immune system to destroy the mass.
A follow-up CT scan showed the mass only slightly smaller, but a new tumor mass appeared in the small bowel. This was removed by laparoscopic surgery.
We then proceeded to chemotherapy and after 3 cycles of Cisplatin and VP16, the tumor was barely identifiable. No other tumor site could be seen.
The residual tumor site was treated with radiation and chemotherapy used to enhance the radiation. This was Taxotere. After 3 doses of the Taxotere I was too sick to continue taking it and it was stopped.
The result of all this is that, to my knowledge, there is no residual tumor in my body at this time. That's my story and I'm sticking to it.
I am recovering from the Taxotere gradually. My WBC have risen to 2900 from 1900. My Hemoglobin has decreased to 9.9 gms, and I was given a shot of Procrit for that. In my last post, I talked about inability to eat. I have been on TPN (Total Parental Nutrition) which is basically intravenous feedings.
On the first night after 3 days of 2 liters of fluid replacement and TPN, I developed ankle swelling. This rapidly resolved with elevation of the feet. I was having severe pain and burning in the lower chest when eating or drinking. This has largely resolved. I have had episodes of diarrhea, which have not resolved. Food tastes terrible, as if I have anorexia nervosa. This is due to the chemo and should begin to resolve. I am drinking 2-3 bottles of Boost Plus daily adding 700-1050 calories per day. Yesterday, I had 2 eggs. Today, I ate macaroni.
I expect no more than 3 weeks total of TPN.
This TPN is no simple matter. It began with delivery of 2 large boxes of material for one week's supplies. This included 7 bags of the fluid which looks like pale skim milk and has an odor almost like breast milk. 7 vials each of vitamins and other additives also were included. These need to be refrigerated and removed 1-2 hours before use. I set an alarm on my iphone to remind me.
A small infusion pump about the size of a paperback novel provides the power.It runs on a 9 volt battery which needs replacement daily. A disposable device is to lock in place which is part of the tubing that goes from the bag to my Medport. The procedure is as follows. The vitamins are added to the bag. The tubing is locked into the pump. The pump will often complain that it is not locked correctly. The pump is then primed. The port is flushed, and then the tubing attached to the port. The infusion is then ready to start. Needless to say, many things can go wrong. One night, the infusion pump thought it was still pumping from the previous night's residual and delivered only about 30 cc instead of 1800 cc.
I finally have it figured out, but a person untrained in medical procedures will find it easy to go wrong.
I also need to check my glucose 4 times a day. The device for that needs little blood. It is almost painless, but the first night, after 2 tries and error messages, I deferred further testing to the next day. I think I am still doing something wrong or there is a flaw in the device as far as sterility is concerned.
More on this in my next post.
I learned about the "Donut Hole" Because I have reached the donut hole in my Medicare Part D insurance, I am paying the full cost of this TPN. In another post, I hope to discuss the complexities of the donut hole and the inability to get straight answers from providers, one of whom told me it would be $4 per day and then called back and said $100 plus daily not including supplies. Total about $1000 per week. I can afford to pay (in spite of the falling stock market), but it is a powerful incentive to get off the TPN as soon as possible.
What happens to those who don't have the money to pay?
To recap, I originally found a lump in my face on the left in front of my left ear. There was also a small nodule in my left parotid (salivary) gland. Surgery and imaging showed one or two involved lymph nodes in my neck on the left.
After the surgery, I had radiation treatment only to the area of involvement. At that time, I was advised that the chance of complete eradication of the local disease was 80%. However, there was a 50-50 chance that the disease would appear elsewhere. If fact, I was on the wrong side of those odds, and the disease reappeared as a mass adjacent to my lower esophagus. An experimental treatment of a low dose of radiation was attempted in the hopes of stimulating my immune system to destroy the mass.
A follow-up CT scan showed the mass only slightly smaller, but a new tumor mass appeared in the small bowel. This was removed by laparoscopic surgery.
We then proceeded to chemotherapy and after 3 cycles of Cisplatin and VP16, the tumor was barely identifiable. No other tumor site could be seen.
The residual tumor site was treated with radiation and chemotherapy used to enhance the radiation. This was Taxotere. After 3 doses of the Taxotere I was too sick to continue taking it and it was stopped.
The result of all this is that, to my knowledge, there is no residual tumor in my body at this time. That's my story and I'm sticking to it.
I am recovering from the Taxotere gradually. My WBC have risen to 2900 from 1900. My Hemoglobin has decreased to 9.9 gms, and I was given a shot of Procrit for that. In my last post, I talked about inability to eat. I have been on TPN (Total Parental Nutrition) which is basically intravenous feedings.
On the first night after 3 days of 2 liters of fluid replacement and TPN, I developed ankle swelling. This rapidly resolved with elevation of the feet. I was having severe pain and burning in the lower chest when eating or drinking. This has largely resolved. I have had episodes of diarrhea, which have not resolved. Food tastes terrible, as if I have anorexia nervosa. This is due to the chemo and should begin to resolve. I am drinking 2-3 bottles of Boost Plus daily adding 700-1050 calories per day. Yesterday, I had 2 eggs. Today, I ate macaroni.
I expect no more than 3 weeks total of TPN.
This TPN is no simple matter. It began with delivery of 2 large boxes of material for one week's supplies. This included 7 bags of the fluid which looks like pale skim milk and has an odor almost like breast milk. 7 vials each of vitamins and other additives also were included. These need to be refrigerated and removed 1-2 hours before use. I set an alarm on my iphone to remind me.
A small infusion pump about the size of a paperback novel provides the power.It runs on a 9 volt battery which needs replacement daily. A disposable device is to lock in place which is part of the tubing that goes from the bag to my Medport. The procedure is as follows. The vitamins are added to the bag. The tubing is locked into the pump. The pump will often complain that it is not locked correctly. The pump is then primed. The port is flushed, and then the tubing attached to the port. The infusion is then ready to start. Needless to say, many things can go wrong. One night, the infusion pump thought it was still pumping from the previous night's residual and delivered only about 30 cc instead of 1800 cc.
I finally have it figured out, but a person untrained in medical procedures will find it easy to go wrong.
I also need to check my glucose 4 times a day. The device for that needs little blood. It is almost painless, but the first night, after 2 tries and error messages, I deferred further testing to the next day. I think I am still doing something wrong or there is a flaw in the device as far as sterility is concerned.
More on this in my next post.
I learned about the "Donut Hole" Because I have reached the donut hole in my Medicare Part D insurance, I am paying the full cost of this TPN. In another post, I hope to discuss the complexities of the donut hole and the inability to get straight answers from providers, one of whom told me it would be $4 per day and then called back and said $100 plus daily not including supplies. Total about $1000 per week. I can afford to pay (in spite of the falling stock market), but it is a powerful incentive to get off the TPN as soon as possible.
What happens to those who don't have the money to pay?
Wednesday, August 3, 2011
I Am Put On IV Hyperalimentation
I am writing this while receiving the third and last 2 liter IV fluid infusion over the past 3 days.
Since my last post, I have not felt up to writing down my thoughts and feelings. I will start with a litany of complaints.
Everything tastes terrible. It is very hard to force food into my body when everything tastes so bad.
My mouth is very dry. My tongue feels like sandpaper. It is white, with cracks in it. I don't think I have Candida, (Thrush).
I am having difficulty swallowing. I can get stuff past my throat but it does not go through my esophagus easily, and creates discomfort on the way down. I also have pretty much continuous heartburn.
I am having upper abdominal cramps. I had severe diarrhea earlier in the week. This has subsided.
As a result of these complaints, I have decided to stop the Taxotere, with the agreement of Dr. John who examined me on Monday. In addition to these complaints, it turns out my white count was down to 1900. The purpose of the Taxotere was to enhance the effect of the radiation treatments and I think they need no enhancement.
I continue to lose weight and am not ingesting adequate nutrition. I saw a dietitian yesterday morning and the choices or me are tube feedings, intravenous hyperalimentation, or to force enough food down by mouth. I opted for the latter, but failed. Tube feedings could be done through a naso-gastric tube or a percutaneous gastrostomy. I don't think I could take a nasogastric tube for very long so this narrows the choice to IV feedings or a percutaneous gastrostomy. This is a tube placed through the abdominal wall into the stomach. Bottom line: IV nutrition for me.
This will be set up this afternoon. Apparently Medicare does not cover all the cost, but I will only have to pay $35 per day.
I have only 8 more radiation treatments left and am off the taxotere, so I don't think this will go on for more than a month.
I am also back to another series of Leukine for my white count.
I am writing this after a meeting with the home infusion nurse. She has been very helpful in getting this all set up and will be back tomorrow to watch me set it all up for myself. As a trained physician, I think I can manage all this without great difficulty, but without such training, it would be a real challenge.
Supplies delivered this afternoon included multiple tubes and pre-filled syringes, vitamin doses to add to the fluids, plastic bags each containing 1900 cc of what looks like low-fat milk, a battery powered infusion pump, and supplies needed to test my blood sugar.
All went well except that I was concerned about a small amount of air in the infusion line. I removed it from a side port using the needle to add the vitamins to the infusion. All is set up and running. The infusions last 18 hours giving me only 6 hours free of the pump which is neatly housed in a back pack they provided.
The pump is not entirely silent and will take some getting used to, not unlike my dog snoring (he's much louder). I suspect it will be one reason I'll be sleeping alone tonight. The other is that I will have to shower during that 6 hour window.
I did manage to down 3 bottles of Boost Plus today so perhaps if I can continue that, I can shorten the infusions.
No IV pole, so I have rigged something up with a camera tripod. I'll ask for the pole tomorrow.
Thanks Karen for your patience and instructions in getting all this set up.
I am still hoping to get to Good Company Players to see Eva in the final performance of her drama classes. That will take place Friday afternoon about 1/2 hour after I remove the infusion during my 6 hour break.
Since my last post, I have not felt up to writing down my thoughts and feelings. I will start with a litany of complaints.
Everything tastes terrible. It is very hard to force food into my body when everything tastes so bad.
My mouth is very dry. My tongue feels like sandpaper. It is white, with cracks in it. I don't think I have Candida, (Thrush).
I am having difficulty swallowing. I can get stuff past my throat but it does not go through my esophagus easily, and creates discomfort on the way down. I also have pretty much continuous heartburn.
I am having upper abdominal cramps. I had severe diarrhea earlier in the week. This has subsided.
As a result of these complaints, I have decided to stop the Taxotere, with the agreement of Dr. John who examined me on Monday. In addition to these complaints, it turns out my white count was down to 1900. The purpose of the Taxotere was to enhance the effect of the radiation treatments and I think they need no enhancement.
I continue to lose weight and am not ingesting adequate nutrition. I saw a dietitian yesterday morning and the choices or me are tube feedings, intravenous hyperalimentation, or to force enough food down by mouth. I opted for the latter, but failed. Tube feedings could be done through a naso-gastric tube or a percutaneous gastrostomy. I don't think I could take a nasogastric tube for very long so this narrows the choice to IV feedings or a percutaneous gastrostomy. This is a tube placed through the abdominal wall into the stomach. Bottom line: IV nutrition for me.
This will be set up this afternoon. Apparently Medicare does not cover all the cost, but I will only have to pay $35 per day.
I have only 8 more radiation treatments left and am off the taxotere, so I don't think this will go on for more than a month.
I am also back to another series of Leukine for my white count.
I am writing this after a meeting with the home infusion nurse. She has been very helpful in getting this all set up and will be back tomorrow to watch me set it all up for myself. As a trained physician, I think I can manage all this without great difficulty, but without such training, it would be a real challenge.
Supplies delivered this afternoon included multiple tubes and pre-filled syringes, vitamin doses to add to the fluids, plastic bags each containing 1900 cc of what looks like low-fat milk, a battery powered infusion pump, and supplies needed to test my blood sugar.
All went well except that I was concerned about a small amount of air in the infusion line. I removed it from a side port using the needle to add the vitamins to the infusion. All is set up and running. The infusions last 18 hours giving me only 6 hours free of the pump which is neatly housed in a back pack they provided.
The pump is not entirely silent and will take some getting used to, not unlike my dog snoring (he's much louder). I suspect it will be one reason I'll be sleeping alone tonight. The other is that I will have to shower during that 6 hour window.
I did manage to down 3 bottles of Boost Plus today so perhaps if I can continue that, I can shorten the infusions.
No IV pole, so I have rigged something up with a camera tripod. I'll ask for the pole tomorrow.
Thanks Karen for your patience and instructions in getting all this set up.
I am still hoping to get to Good Company Players to see Eva in the final performance of her drama classes. That will take place Friday afternoon about 1/2 hour after I remove the infusion during my 6 hour break.
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