This message is just to keep you informed of my schedule in the days to come.
March 18 (tomorrow): I will spend the morning at the Notre-Dame Hospital for pre-op tests: blood work, ECG, urine analysis.
here will be a scan of the thorax and abdomen but perhaps not tomorrow.
Dr Y, the surgeon, wanted to have these scans done by his hospital on top of those done at Sacred Coeur.
March 22 (Sunday) is the day of my PET scan (nuclear medecine imaging). This review is essential for my surgeon's decision-making: to operate or not.
March 23: Chimio # 15, the doses of all agents were reduced. It has been 5 weeks that I did not have chemo.
March 25: I get my bottle of chemotherapy unplugged and also my Piccline. This will allow me to swim whule in Dubai. Upon my return, according to the planning of the operation, I will have a port-o-cath installed, it's another distribution system for chemo that sits under the skin in the pectoral region, a bit like a peacemaker.
early April: departure for Dubai.
23 April: meeting with Dr. Y. Decision on the operation.
Tuesday, March 17, 2009
Thursday, March 12, 2009
Medical appointment update
Well! We had a big day for appointments and information. I will summarize it.
Dr C. prescribed chemotherapy next week. It will be Wednesday. The doses of each chemotherapy agent have been reduced. For the PET scan that we wanted to have Monday, it's pretty hard. If the trend continues I will go in the private sector even if it costs an arm and a leg.
Dr. Y told us his vision. It seems that I have 2 strikes against me even before you begin: metastasis to the liver, the extent of the disease (he explained that even if we do not see cancer anymore several areas were still affected). He told me about the statistics and as you know they do not interest me. He had to do it because if he accepts to operate it is a very difficult procedure. My stay at the hospital will be about a month (including a week in intensive care) and recovery should be about three months. So he wanted me to take an informed decision. I also believe that he tested my determination.
He now has to talk to a colleague before making his final decision (operate or not). In the meantime he will have me go through the pre-op testing. A series of tests before the end of March for a possible late April early May surgery. If the doctor agrees to operate, and I am confident he will accept. The three months of recovery will be very hard but not as much on me as on my wife and children. It will be in this period that I count on you a lot to offer support and assistance to Marie-Josée. I will have a single focus, get back full health with the fewest complications.
Finally, there is good news, my markers are now 5.4, very near the normal range.
Good weekend!
Dr C. prescribed chemotherapy next week. It will be Wednesday. The doses of each chemotherapy agent have been reduced. For the PET scan that we wanted to have Monday, it's pretty hard. If the trend continues I will go in the private sector even if it costs an arm and a leg.
Dr. Y told us his vision. It seems that I have 2 strikes against me even before you begin: metastasis to the liver, the extent of the disease (he explained that even if we do not see cancer anymore several areas were still affected). He told me about the statistics and as you know they do not interest me. He had to do it because if he accepts to operate it is a very difficult procedure. My stay at the hospital will be about a month (including a week in intensive care) and recovery should be about three months. So he wanted me to take an informed decision. I also believe that he tested my determination.
He now has to talk to a colleague before making his final decision (operate or not). In the meantime he will have me go through the pre-op testing. A series of tests before the end of March for a possible late April early May surgery. If the doctor agrees to operate, and I am confident he will accept. The three months of recovery will be very hard but not as much on me as on my wife and children. It will be in this period that I count on you a lot to offer support and assistance to Marie-Josée. I will have a single focus, get back full health with the fewest complications.
Finally, there is good news, my markers are now 5.4, very near the normal range.
Good weekend!
Tuesday, March 10, 2009
Stabilization
I am writing today March 10 to announce that my condition seemed to stabilize more than two weeks after the beginning of my diarrhea. As I said earlier it was a difficult period, both physicaly and the psychologicaly. It is a vicious circle which I managed to get out of today thanks to my wife and my brother Omer. Marie-Josée found this period difficult but she was able to give me reason to hold on to and change my paradigm. Let me explain: My body was losing strength because of diarrhea and so was my mind. I could not explain why this was happening, even though deep down I knew that it was a side effect of my new chemo. Being aware of this fact did not really help me justify the severity of the effect. The first turning point was provided Marie-Josée. In her readings on the Internet, she shared an anecdote of a patient who received irinotecan, whom also had diarrhea. This patient sayd It was a strong dose of irinotecan that gave such a severe case of diarrhea but the outcome was that all her metastases had disappear after this treatment. This story gave me a positive spin out of my downward spiral. Now my position is that the diarrhea was caused by a high dose combined with the fact that I probably have no more cancer so the chemotherapy only had my gut to attack. Me, I buy this version. This can not be confirmed until a few weeks but now my mood is in better health. The cherry on the sunday was the call from my brother Omer today. He offered to have a coffee in my neighbourhood. Omer and I do this from time to time when his work brings him in my neck of the woods. It had been a while so today's invitation was welcomed. Even though my moral was better, I lacked a little something to be fully motivated. 30 minutes chatting with him pumped me up and completed my recovery.
Thank you to my wife and my brother. It's amazing what a good timing can do for someone.
Here is the schedule for the coming days:
Thursday I meet with Dr. C, hematologist. She will probably prescribe chemo next week.
Then, Thursday at noon I meet the surgeon dr Y. I look forward to have his opinion and at the same time I fear will not hear what I want.
Since diarrhea delayed my treatment, Marie-Josée saw an opportunity to do the PET scan earlier. So we are waiting to see if next Monday, there would be a spot for me. We strongly hope.
Finally we continue to plan the trip to Dubai. The aircraft is booked and the hotel too. Children are keen to go skiing in the inside ski resort. There are plenty of other activities that we expect to do. We will be glad to share the first eight days there with grandpa Yvon and Loulou. We are fortunate to have our reception committee on site. I will let you know about my medical visits as soon as I can.
Thank you to my wife and my brother. It's amazing what a good timing can do for someone.
Here is the schedule for the coming days:
Thursday I meet with Dr. C, hematologist. She will probably prescribe chemo next week.
Then, Thursday at noon I meet the surgeon dr Y. I look forward to have his opinion and at the same time I fear will not hear what I want.
Since diarrhea delayed my treatment, Marie-Josée saw an opportunity to do the PET scan earlier. So we are waiting to see if next Monday, there would be a spot for me. We strongly hope.
Finally we continue to plan the trip to Dubai. The aircraft is booked and the hotel too. Children are keen to go skiing in the inside ski resort. There are plenty of other activities that we expect to do. We will be glad to share the first eight days there with grandpa Yvon and Loulou. We are fortunate to have our reception committee on site. I will let you know about my medical visits as soon as I can.
Thursday, March 5, 2009
A week in Hell
Hello to you all.
The last week has been painful. In fact, it was the worst week since the beginning of my treatments. Normally after the chemo I sleep a few days and I feel like Sleeping Beauty who wakes up a little more each day. Except for last week when the day I usually feel normal, I began diarrhea. It was Friday 18:30. It lasted until Wednesday of the next week, or yesterday. Diarrhea as I've never had in my life. I followed the Imodium protocol I had received from the hospital pharmacist, but things did not change. This protocol requires taking 2 tablets of 2 mg at the onset of diarrhea followed by one tablet every 2 hours (2 tabs every 4 hours at night). I continue this until 12 hours has elapsed since the last diarrhea.
I did that Friday, Saturday and Sunday. Come Monday I called the hospital because the danger of this type of diarrhea is dehydration, and all of its consequences. I was therefore instructed to go to the hospital Monday to meet Dr L, to do a blood test and then receive a glucose solution intraveinously. I saw Dr. L. He looked at the results of my blood sample and I was not dehydrated so I didn't get the intraveinous solution. Still, I am really tired. My next chemo is scheduled for Wednesday but the doc believes that we should make the decision Wednesday morning.
In the meantime, he prescribed Sandostatin. A powerful drug, given by subcutaneous injection, to control peristalsis (bowel movement). It is imperative to calm the frenzy in my belly. As I have a generalized itching and I think it is the Imodium, he substituted it with Lomotil. For Sandostatin I receive the first dose at the hospital under observation in case of allergic reaction. Small administrative errors were made so I had to wait 3 hours before receiving my injection. That evening my wife stuck a needle in me once for Neupogen and 2 times for Sandostatin (the pharmacy had only vials of 100 mcg while I need 200 mcg). My stomach began to calm down. I could sleep a little better.
Sleep. It was not so easy with the Imodium protocol since I had to set my alarm clock for the night dose, at least Sandostatin provided a good night.
The next morning my upper lip looked like itwas injected with collagen. Josée thought I was having a stroke. I reassured her but my mouth really looked weird. I therefore decided not to receive the morning dose of Sandostatin should it be responsible for the swelling (or allergic reaction).
I turned to Lomotil, 2 tabs q4h (2 tablets every four hours). Wednesday morning, a day of planned chemotherapy and where I met Dr. L. at 8:30. Danielle (Josée's aunt) came to the house to babysit. Upon entering the office of the doc, he noticed that I did not look my best. I confirmed that it was slowly getting better but I am still very tired. We agree to postpone chemo to next Monday. I want to be in top shape a few days before falling down again with chemo. In discussing with Dr L., I admitted I was scared this week. He said "me too".
I was afraid of not being able to get out of this diarrhea or to have to eliminate Irinotecan from my arsenal too early (three doses). He reassured me. Several options are still available and the first is a reduction in the dose of irinotecan. He mentioned that as we have an aggressive attitude, so was the dose. For the next treatment everything will be adjusted. It will be adjusted not only according to the scale but also because I lost 7 pounds (about 3 kg) in the last week. I went from 170 to 163. When the hospital pharmacist called me to check my weight she had 175 pounds in her notes. I hope, I am sure that the difference will be noticeable when my next treatment comes.
Regarding the itching, we don't know the cause. Wednesday while returning from the hospital we purchased some Benadryl. As Danielle was at home she kindly agreed to stay a little longer so I could take Benadryl and sink into sleep. That's what happened from 10:00 to 14:00. A very deep sleep and rest. Today, Thursday, my bowel movements seem under control. The content of my stools are still very liquid, but it's a slow return to normal.
In any case my energy level now is quite reassuring. I have 2 more chemo before taking a break in preparation for the PET scan. I do not want to relive a week as the last.
The last week has been painful. In fact, it was the worst week since the beginning of my treatments. Normally after the chemo I sleep a few days and I feel like Sleeping Beauty who wakes up a little more each day. Except for last week when the day I usually feel normal, I began diarrhea. It was Friday 18:30. It lasted until Wednesday of the next week, or yesterday. Diarrhea as I've never had in my life. I followed the Imodium protocol I had received from the hospital pharmacist, but things did not change. This protocol requires taking 2 tablets of 2 mg at the onset of diarrhea followed by one tablet every 2 hours (2 tabs every 4 hours at night). I continue this until 12 hours has elapsed since the last diarrhea.
I did that Friday, Saturday and Sunday. Come Monday I called the hospital because the danger of this type of diarrhea is dehydration, and all of its consequences. I was therefore instructed to go to the hospital Monday to meet Dr L, to do a blood test and then receive a glucose solution intraveinously. I saw Dr. L. He looked at the results of my blood sample and I was not dehydrated so I didn't get the intraveinous solution. Still, I am really tired. My next chemo is scheduled for Wednesday but the doc believes that we should make the decision Wednesday morning.
In the meantime, he prescribed Sandostatin. A powerful drug, given by subcutaneous injection, to control peristalsis (bowel movement). It is imperative to calm the frenzy in my belly. As I have a generalized itching and I think it is the Imodium, he substituted it with Lomotil. For Sandostatin I receive the first dose at the hospital under observation in case of allergic reaction. Small administrative errors were made so I had to wait 3 hours before receiving my injection. That evening my wife stuck a needle in me once for Neupogen and 2 times for Sandostatin (the pharmacy had only vials of 100 mcg while I need 200 mcg). My stomach began to calm down. I could sleep a little better.
Sleep. It was not so easy with the Imodium protocol since I had to set my alarm clock for the night dose, at least Sandostatin provided a good night.
The next morning my upper lip looked like itwas injected with collagen. Josée thought I was having a stroke. I reassured her but my mouth really looked weird. I therefore decided not to receive the morning dose of Sandostatin should it be responsible for the swelling (or allergic reaction).
I turned to Lomotil, 2 tabs q4h (2 tablets every four hours). Wednesday morning, a day of planned chemotherapy and where I met Dr. L. at 8:30. Danielle (Josée's aunt) came to the house to babysit. Upon entering the office of the doc, he noticed that I did not look my best. I confirmed that it was slowly getting better but I am still very tired. We agree to postpone chemo to next Monday. I want to be in top shape a few days before falling down again with chemo. In discussing with Dr L., I admitted I was scared this week. He said "me too".
I was afraid of not being able to get out of this diarrhea or to have to eliminate Irinotecan from my arsenal too early (three doses). He reassured me. Several options are still available and the first is a reduction in the dose of irinotecan. He mentioned that as we have an aggressive attitude, so was the dose. For the next treatment everything will be adjusted. It will be adjusted not only according to the scale but also because I lost 7 pounds (about 3 kg) in the last week. I went from 170 to 163. When the hospital pharmacist called me to check my weight she had 175 pounds in her notes. I hope, I am sure that the difference will be noticeable when my next treatment comes.
Regarding the itching, we don't know the cause. Wednesday while returning from the hospital we purchased some Benadryl. As Danielle was at home she kindly agreed to stay a little longer so I could take Benadryl and sink into sleep. That's what happened from 10:00 to 14:00. A very deep sleep and rest. Today, Thursday, my bowel movements seem under control. The content of my stools are still very liquid, but it's a slow return to normal.
In any case my energy level now is quite reassuring. I have 2 more chemo before taking a break in preparation for the PET scan. I do not want to relive a week as the last.
Wednesday, February 25, 2009
Run a half-marathon... checked
Not me, Marie-Josée. You remember she was training for that. She wanted to do it in September 2008 but things happened.
Well she ran the hypothermic half-marathon this Saturday February 21 at Parc Jean-Drapeau.
A race of 21.1 km along the river at -15 celsius with westerly winds of 25 km/h. She did it with an injured knee but still managed a time of 2:34. Note that I'm not saying that she finished it, because for me that was a given. It's her time that impresses me. Imagine in the summer with a healthy knee she will certainly do it in 2h15, a very respectable time for a second half-marathon.
After that I feel small when I can not kick myself in the ass to go 3 km on the treadmill.
Here are some photos:
Well she ran the hypothermic half-marathon this Saturday February 21 at Parc Jean-Drapeau.
A race of 21.1 km along the river at -15 celsius with westerly winds of 25 km/h. She did it with an injured knee but still managed a time of 2:34. Note that I'm not saying that she finished it, because for me that was a given. It's her time that impresses me. Imagine in the summer with a healthy knee she will certainly do it in 2h15, a very respectable time for a second half-marathon.
After that I feel small when I can not kick myself in the ass to go 3 km on the treadmill.
Here are some photos:
web.jpg)
.JPG)
.JPG)
.JPG)
Tuesday, February 17, 2009
Chemo #14
I'm sitting at the dining table sipping my green tea after my peanut butter toasts. Marie-Josée is in front of me making her morning tour of her favorite websites (Facebook, email, blog about cancer, my blog, news). I take the time to write this blog before leaving for the hospital where I should receive my chemo # 14 (3rd Folfiri).
Yesterday I had an appointment with Dr. L.. Guess what? He talked to me about surgery. He said he had reviewed my case with my surgeon and Dr. P the best radiologist in the hospital. They agreed that the reduction in cancer was important. This led me to ask if I was in remission. He said in partial remission ... YES!
Then he told me he had spoken to a surgeon at Maisonneuve-Rosemont for the super specialized operation called HIPEC. The surgeon, given the presence of a spot on the liver, no matter how small, has refused to take my case. He considers that I need to continue chemo to reduce whatever is left, the less there is the better.
But in our conversation with Dr. L. we talked about another surgeon that can do the HIPEC, Dr Y.
Dr L. said he would call to ask for his opinion. We must understand that in the case of this kind of surgery there is no consensus among surgeons. Dr Y is at the CHUM (Montreal University hospital network) therefore practice philosophy is sometimes different from one hospital to another.
Yesterday evening I received the call from Dr. L who told me that he spoke directly to Dr Y about my case. The latter agreed to meet me in 3 weeks. This will be a preliminary meeting where I expect he will explain the reasons why I am a candidate or not for this surgery. Dr Y has requested a PET scan before giving its final decision on the feasibility of the operation. As this examination requires a cessation of chemotherapy for a period of 3 weeks before, we will take this opportunity to go to Dubai. We will be there 2 weeks and my stepfather and his wife will be with us for 8 days (they live in Kuwait, just next door ;-). They will retrieve my Piccline and I'll get a port-o-cath installed when I come back. A Port-o-cath is a system of distribution for the chemo which is implanted under the skin like a pacemaker. This has the advantage of allowing me to bathe, take a shower without worry of a bandage and a direct opening to my heart.
All this to tell you we were excited yesterday, partial remission, exploration of the possibility of surgery, yes sir!
There was just a little news that brought us back on earth, my markers went up rather than down. My CEA were 8.8 (6.2 last time). Dr L. as usual is quite stoic. His comment was "This shows that we made the change in treatment at the right time." In other words, it could be a possible indication that FOLFOX started to lose its effect. There was a slowdown when one considers the trend of the CEA markers(13, 12, 10, 7, 6.7, 6.2, 8.8). Of course the toxicity forced us to change but what he says is that the efficiency points to this change also. So for him Folfiri is a good deal at this point.
I gotta go. There may be no blog for a few days but don't worry too much.
Yesterday I had an appointment with Dr. L.. Guess what? He talked to me about surgery. He said he had reviewed my case with my surgeon and Dr. P the best radiologist in the hospital. They agreed that the reduction in cancer was important. This led me to ask if I was in remission. He said in partial remission ... YES!
Then he told me he had spoken to a surgeon at Maisonneuve-Rosemont for the super specialized operation called HIPEC. The surgeon, given the presence of a spot on the liver, no matter how small, has refused to take my case. He considers that I need to continue chemo to reduce whatever is left, the less there is the better.
But in our conversation with Dr. L. we talked about another surgeon that can do the HIPEC, Dr Y.
Dr L. said he would call to ask for his opinion. We must understand that in the case of this kind of surgery there is no consensus among surgeons. Dr Y is at the CHUM (Montreal University hospital network) therefore practice philosophy is sometimes different from one hospital to another.
Yesterday evening I received the call from Dr. L who told me that he spoke directly to Dr Y about my case. The latter agreed to meet me in 3 weeks. This will be a preliminary meeting where I expect he will explain the reasons why I am a candidate or not for this surgery. Dr Y has requested a PET scan before giving its final decision on the feasibility of the operation. As this examination requires a cessation of chemotherapy for a period of 3 weeks before, we will take this opportunity to go to Dubai. We will be there 2 weeks and my stepfather and his wife will be with us for 8 days (they live in Kuwait, just next door ;-). They will retrieve my Piccline and I'll get a port-o-cath installed when I come back. A Port-o-cath is a system of distribution for the chemo which is implanted under the skin like a pacemaker. This has the advantage of allowing me to bathe, take a shower without worry of a bandage and a direct opening to my heart.
All this to tell you we were excited yesterday, partial remission, exploration of the possibility of surgery, yes sir!
There was just a little news that brought us back on earth, my markers went up rather than down. My CEA were 8.8 (6.2 last time). Dr L. as usual is quite stoic. His comment was "This shows that we made the change in treatment at the right time." In other words, it could be a possible indication that FOLFOX started to lose its effect. There was a slowdown when one considers the trend of the CEA markers(13, 12, 10, 7, 6.7, 6.2, 8.8). Of course the toxicity forced us to change but what he says is that the efficiency points to this change also. So for him Folfiri is a good deal at this point.
I gotta go. There may be no blog for a few days but don't worry too much.
Thursday, February 5, 2009
Confirmation of the good news
Tuesday I went to the hospital because I had an appointment with a haematologist. It was also the scheduled day of chemotherapy but the results of my blood test on Monday was 1.1 so in theory too low for chemo. I will talk further about it later. In the absence of Dr L this week I met Dr. C. a haematologist who returns from a one-year fellowship in Australia. We were told she was excellent and very nice. She saw my file for the first time. As soon as we entered the office her first comment was.
-Wow! You have an excellent response to Folfox. Marie-Josée and I have looked at each other with an amused look. Our faces seemed to say: Well! We kind of thought so but we were waiting for confirmation from a haematologist.
At this point I said:
-In fact, it's over with Folfox since I had a severe reaction to the oxaliplatin, so we started Folfiri two weeks ago and that is why we have this appointment... a question of checking if there is any issue with the new treatment.
- And how are you?
-Very good. I answered her.
Then she takes a glance at my record, she looked at me and said: "I imagine that you want to receive your treatment today. Again Josée and I looked at each other with a smile. Well, for sure it would be great but I'm 1.1, we are kind of resigned for a delay.
She replied:-There is no reason.
She continued.
-Recent studies have shown that the treatment may, in some cases be given at 0.5. As you were at 1.1 yesterday, I am convinced that you are this morning at 1.3 ... 1.4. Plus you look young and fit then I see no indications against treatment today.
Should I prescribe it?
-Let’s go!
That sums up the story of the treatment that was cancelled but finally got prescribed. Nurses were kind of ready for it to happen because it seems that since Dr C. returned she is somewhat rewriting the established guidelines, with a smile of course. Looking at my records she raised another important point.
-You have consulted Dr. W.
-Yes, we were referred, and we wanted a second opinion on the exploratory surgery in July (see blog of August). In addition, this allowed me to be listed as one of his patients for surgery when appropriate.
It was a question of planning.
-What did he say?
-He confirmed the report and confirmed with great empathy that I was a very advanced case. He also opened the door to hope by saying that if the chemo worked well and I became a candidate for surgical specialist (called Hipec), he would submit my case to his colleague.
-Dr Younan.
-No, Dr Loungnarath.
-I know Dr. Younan and if you want I can submit your file to get his opinion as to the suitability of your case for surgery. Naturally in agreement with Dr. L.
Here, I went wild. A month ago I had the idea that it would be a longer battle than I had visualized. Finally, the doctor gives me hope that a late spring early summer could be possible. In any case it is the first haematologist to open the door to the surgery which was the objective from the beginning.
I was so pleased that throughout my treatment Josée observed that I had a smirk just like a little boy. She smiled widely herself.
In conclusion, an excellent day for our family. I continue to work on the remaining small spots around the liver and we’ll be talking about surgery soon.
-Wow! You have an excellent response to Folfox. Marie-Josée and I have looked at each other with an amused look. Our faces seemed to say: Well! We kind of thought so but we were waiting for confirmation from a haematologist.
At this point I said:
-In fact, it's over with Folfox since I had a severe reaction to the oxaliplatin, so we started Folfiri two weeks ago and that is why we have this appointment... a question of checking if there is any issue with the new treatment.
- And how are you?
-Very good. I answered her.
Then she takes a glance at my record, she looked at me and said: "I imagine that you want to receive your treatment today. Again Josée and I looked at each other with a smile. Well, for sure it would be great but I'm 1.1, we are kind of resigned for a delay.
She replied:-There is no reason.
She continued.
-Recent studies have shown that the treatment may, in some cases be given at 0.5. As you were at 1.1 yesterday, I am convinced that you are this morning at 1.3 ... 1.4. Plus you look young and fit then I see no indications against treatment today.
Should I prescribe it?
-Let’s go!
That sums up the story of the treatment that was cancelled but finally got prescribed. Nurses were kind of ready for it to happen because it seems that since Dr C. returned she is somewhat rewriting the established guidelines, with a smile of course. Looking at my records she raised another important point.
-You have consulted Dr. W.
-Yes, we were referred, and we wanted a second opinion on the exploratory surgery in July (see blog of August). In addition, this allowed me to be listed as one of his patients for surgery when appropriate.
It was a question of planning.
-What did he say?
-He confirmed the report and confirmed with great empathy that I was a very advanced case. He also opened the door to hope by saying that if the chemo worked well and I became a candidate for surgical specialist (called Hipec), he would submit my case to his colleague.
-Dr Younan.
-No, Dr Loungnarath.
-I know Dr. Younan and if you want I can submit your file to get his opinion as to the suitability of your case for surgery. Naturally in agreement with Dr. L.
Here, I went wild. A month ago I had the idea that it would be a longer battle than I had visualized. Finally, the doctor gives me hope that a late spring early summer could be possible. In any case it is the first haematologist to open the door to the surgery which was the objective from the beginning.
I was so pleased that throughout my treatment Josée observed that I had a smirk just like a little boy. She smiled widely herself.
In conclusion, an excellent day for our family. I continue to work on the remaining small spots around the liver and we’ll be talking about surgery soon.
Subscribe to:
Posts (Atom)