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Medical Update May 12, 2015
Dear friends and family,
Well, it has been an interesting few months. After the doctor said my cancer was in complete remission we were looking forward to getting this whole thing over. Wrong!
During one of the scan procedures the doctors noticed a problem in my lung as the reason I have been short of breath all the time. Sometimes I can't even finish a sentence before I run out of breath. Turns out I have a pulmonary embolism (blood clot) in my lungs where the blood takes oxygen from the lung. They immediately sent me back to the emergency room and three more days in the hospital for more testing. If these things break loose it can mean total lights out.
After a couple of days of deliberation they came up with a plan to put me on a new clot busting drug that will slowly dissolve the clot in six months or so. They were concerned that the small blood vessels in my brain will now be more vulnerable to bleeding as my blood is now thinned out. It is a balance between being aggressive on the clot without giving me an increased chance of having a stroke.
Next came the problem with a rash I have had all along during this process. Biopsies were inconclusive so I went to Boston yesterday to visit a specialist in this type of cancer and its presentations.
Looks like more treatments are needed.
With my present condition of remission I have a 20% survival rate. However, with a bone marrow transplant that can be boosted to 60%. I guess it’s a no brainer. Gotta do it.
So, when I am totally finished with my treatments (next one starts tomorrow) and have a few weeks to recover fully they will start on the next procedure, probably in early July.
This means a month in the hospital. The first week they will draw blood every day for about seven hours each day. They will then filter the blood taking out just what cells they need to make my bones start growing new cells. By using my own blood this avoids all the transplant drugs.
The last three weeks I get my own blood cells back and get massive doses (10 times the normal rate) of chemicals I have been getting. This will completely zero out my immune system. I’ll stay in a high pressure environment so nothing can come in via the air filtration system. During this time I will have absolutely no ability to fight infections until I begin to produce more blood cells. Lots of masks and gowns. I’m not looking forward to how I will feel during all this.
I guess that’s enough for now except how much I appreciate all your support and well wishes. Your support sustains me.
I'll come out the other end just fine!
Dave
Dear friends and family,
Well, it has been an interesting few months. After the doctor said my cancer was in complete remission we were looking forward to getting this whole thing over. Wrong!
During one of the scan procedures the doctors noticed a problem in my lung as the reason I have been short of breath all the time. Sometimes I can't even finish a sentence before I run out of breath. Turns out I have a pulmonary embolism (blood clot) in my lungs where the blood takes oxygen from the lung. They immediately sent me back to the emergency room and three more days in the hospital for more testing. If these things break loose it can mean total lights out.
After a couple of days of deliberation they came up with a plan to put me on a new clot busting drug that will slowly dissolve the clot in six months or so. They were concerned that the small blood vessels in my brain will now be more vulnerable to bleeding as my blood is now thinned out. It is a balance between being aggressive on the clot without giving me an increased chance of having a stroke.
Next came the problem with a rash I have had all along during this process. Biopsies were inconclusive so I went to Boston yesterday to visit a specialist in this type of cancer and its presentations.
Looks like more treatments are needed.
With my present condition of remission I have a 20% survival rate. However, with a bone marrow transplant that can be boosted to 60%. I guess it’s a no brainer. Gotta do it.
So, when I am totally finished with my treatments (next one starts tomorrow) and have a few weeks to recover fully they will start on the next procedure, probably in early July.
This means a month in the hospital. The first week they will draw blood every day for about seven hours each day. They will then filter the blood taking out just what cells they need to make my bones start growing new cells. By using my own blood this avoids all the transplant drugs.
The last three weeks I get my own blood cells back and get massive doses (10 times the normal rate) of chemicals I have been getting. This will completely zero out my immune system. I’ll stay in a high pressure environment so nothing can come in via the air filtration system. During this time I will have absolutely no ability to fight infections until I begin to produce more blood cells. Lots of masks and gowns. I’m not looking forward to how I will feel during all this.
I guess that’s enough for now except how much I appreciate all your support and well wishes. Your support sustains me.
I'll come out the other end just fine!
Dave
18 March
Dear friends and family,
Yesterday, on St Paddy's day, Karen and I went to the hospital to get the results of Monday's nuclear PET scan. Our doctor was checking on my progress at reducing the cancer and possibly changing my treatment if I was not progressing well.
However, we all amazed that the results showed
NO MORE CANCER!Can you believe it?!!? What great news!!!
My spleen which previously lit up like a Las Vegas hotel sign was absolutely dark. Likewise were the other areas in my bones, liver, blood, etc. To say we are on cloud nine is an understatement,
I still must continue with the treatment as there may be a few cells hiding out somewhere but the doctor will evaluate me after five treatments and decide whether I need the sixth and last one or not. That would be great for me as well. Save three weeks of getting sick.
I know that all your support and best wishes played a major part of keeping me focused on the goal to beat this. The spinal meningitis is gone, the cancer is gone and I can start to put things back to normal in the following months.
I just had to share the great news with you all and once again thank you all for the absolutely superb support!
Dave
(Celebrating the great news with green beer at our local watering hole)
Dear friends and family,
Yesterday, on St Paddy's day, Karen and I went to the hospital to get the results of Monday's nuclear PET scan. Our doctor was checking on my progress at reducing the cancer and possibly changing my treatment if I was not progressing well.
However, we all amazed that the results showed
NO MORE CANCER!Can you believe it?!!? What great news!!!
My spleen which previously lit up like a Las Vegas hotel sign was absolutely dark. Likewise were the other areas in my bones, liver, blood, etc. To say we are on cloud nine is an understatement,
I still must continue with the treatment as there may be a few cells hiding out somewhere but the doctor will evaluate me after five treatments and decide whether I need the sixth and last one or not. That would be great for me as well. Save three weeks of getting sick.
I know that all your support and best wishes played a major part of keeping me focused on the goal to beat this. The spinal meningitis is gone, the cancer is gone and I can start to put things back to normal in the following months.
I just had to share the great news with you all and once again thank you all for the absolutely superb support!
Dave
(Celebrating the great news with green beer at our local watering hole)
11 March
Dear Friends,
Now that I have completed my third round of treatment it's time for an update.
On Monday the 2nd I went in for a chemical infusion of the cancer fighting drugs which takes about 3 1/2 hours. It's not very intense as I just sit there and let the chemicals drip in.
On Tuesday I returned to the hospital to get an intrathecal procedure whereby a large needle was inserted into my spine and spinal fluid was removed. Then a similar amount of cancer fluid was put back in. The procedure took about an hour. This was the first of four planned procedures.
On Wednesday I began to feel the effects of the chemo and didn't feel very well which is normal.
On Thursday I was extremely tired and feeling a bit nauseas and by late afternoon I had developed at headache. We called the hospital to tell them of my condition and they asked me to come to the ER right away. As this was the day of the big storm we had received over ten inches of snow and it was still snowing, Stacy, Karen and I drove through the storm to the ER where they started working on me right away.
The attending doctor wanted to take a spinal tap so I steeled myself for that procedure. Unfortunately, she couldn't find the right spot in my spine and after 5-6 attempts at getting the needle in I asked her to get a buddy to take a whack at it. She found another doctor who got it right after two attempts.
From there I went to a hospital room and started a terrible four days.
The spinal tap showed I had spinal meningitis so I was started on massive doses of heavy antibiotics which I got about every 45 minutes on a 24/7 schedule. It was impossible to get any sleep and in between the changing fluids there was the usual getting stuck for blood, taking vital signs, cleaning the room, introduction of new nurses, etc. With all the fluids I was receiving I had to get rid of the fluids about every 30 minutes.
My room did not have a private toilet and only had a small curtain to pull and cover the room door. I was "surprised" a couple of times by someone coming to do one procedure or another.
The antibiotics made me sick and their odor was almost too much to bear. It permeated everything in the room and I couldn't escape it.
With a permanent IV in my arm I couldn't move much and had to constantly remind myself to keep my arm out straight or it would stop the fluid flow and sound an alarm. I probably heard that going off 50 times a day.
The doctors were good at keeping me up to speed on the many cultures they took trying to isolate the type of meningitis I might have. As the cultures grew over the next three days they all came up negative for bacterial meningitis and they supposed that it may have been an infection caused by the procedure on Tuesday or it could have been an adverse reaction to the chemo in my spine. At any rate, by Monday my body had returned to normal and I was released to go home. HOORAY!
I am now recovering and waiting for my fourth round on the 23rd. In another week I go in for a full body scan to see if the cancer is retreating under this CHOP treatment. If so, good and if not, the doctor will change chemicals. Either way this will continue until mid May.
Once again I send thanks to all of you for your support. Your thoughts gave me great comfort this last week. Karen and Stacey continue to monitor my condition, watch my meds, and tell me what to do. My neighbor plowed us out from the snow and allowed us to get out of the house to go to the ER which turned out to be a "biggie".
I am SO far behind on my correspondence I don't think I'll ever catch up.
The weather is starting to break here in RI and that is what we are all waiting for. The ice is almost gone in the bay and the snow is all melting.
It is time for spring!
Dave
Dear Friends,
Now that I have completed my third round of treatment it's time for an update.
On Monday the 2nd I went in for a chemical infusion of the cancer fighting drugs which takes about 3 1/2 hours. It's not very intense as I just sit there and let the chemicals drip in.
On Tuesday I returned to the hospital to get an intrathecal procedure whereby a large needle was inserted into my spine and spinal fluid was removed. Then a similar amount of cancer fluid was put back in. The procedure took about an hour. This was the first of four planned procedures.
On Wednesday I began to feel the effects of the chemo and didn't feel very well which is normal.
On Thursday I was extremely tired and feeling a bit nauseas and by late afternoon I had developed at headache. We called the hospital to tell them of my condition and they asked me to come to the ER right away. As this was the day of the big storm we had received over ten inches of snow and it was still snowing, Stacy, Karen and I drove through the storm to the ER where they started working on me right away.
The attending doctor wanted to take a spinal tap so I steeled myself for that procedure. Unfortunately, she couldn't find the right spot in my spine and after 5-6 attempts at getting the needle in I asked her to get a buddy to take a whack at it. She found another doctor who got it right after two attempts.
From there I went to a hospital room and started a terrible four days.
The spinal tap showed I had spinal meningitis so I was started on massive doses of heavy antibiotics which I got about every 45 minutes on a 24/7 schedule. It was impossible to get any sleep and in between the changing fluids there was the usual getting stuck for blood, taking vital signs, cleaning the room, introduction of new nurses, etc. With all the fluids I was receiving I had to get rid of the fluids about every 30 minutes.
My room did not have a private toilet and only had a small curtain to pull and cover the room door. I was "surprised" a couple of times by someone coming to do one procedure or another.
The antibiotics made me sick and their odor was almost too much to bear. It permeated everything in the room and I couldn't escape it.
With a permanent IV in my arm I couldn't move much and had to constantly remind myself to keep my arm out straight or it would stop the fluid flow and sound an alarm. I probably heard that going off 50 times a day.
The doctors were good at keeping me up to speed on the many cultures they took trying to isolate the type of meningitis I might have. As the cultures grew over the next three days they all came up negative for bacterial meningitis and they supposed that it may have been an infection caused by the procedure on Tuesday or it could have been an adverse reaction to the chemo in my spine. At any rate, by Monday my body had returned to normal and I was released to go home. HOORAY!
I am now recovering and waiting for my fourth round on the 23rd. In another week I go in for a full body scan to see if the cancer is retreating under this CHOP treatment. If so, good and if not, the doctor will change chemicals. Either way this will continue until mid May.
Once again I send thanks to all of you for your support. Your thoughts gave me great comfort this last week. Karen and Stacey continue to monitor my condition, watch my meds, and tell me what to do. My neighbor plowed us out from the snow and allowed us to get out of the house to go to the ER which turned out to be a "biggie".
I am SO far behind on my correspondence I don't think I'll ever catch up.
The weather is starting to break here in RI and that is what we are all waiting for. The ice is almost gone in the bay and the snow is all melting.
It is time for spring!
Dave
Saturday, January 17th
Dear Family and Friends,
Yesterday was a very long day as we had to be at the hospital by 7:30 am to have my port installed. The port is implanted in my chest to allow chemicals to be dripped in over a three hour process. Installing it took about two hours and then a wait for recovery.
Next we went back to the main hospital so I could get another EKG. We were lucky that a previous patient failed to show so we got in early.
Since we were out by noon and the next appointment wasn't until 4 pm, we went to a nice brewery in Providence for lunch and a couple of pints.
At 4 we met my doctor who answered many questions, gave me new meds and then took a biopsy from my hip bone and and then bone blood to check for additional possibilities of cancer. I don't recommend the bone biopsy!
Nothing more to do now until Tuesday the 20th when I start the CHOP (chemicals). The doctor says the first week I'll feel fine and people rarely feel more than a mild flue like condition. Next is two weeks off and then I begin the three week process again. CHOP on Tuesdays and then three weeks off.
The feeling bad, hair loss, irritability and other side effects progressively increase throughout the six week treatment process and there really isn't anything else to report. Should something crop up that seems newsworthy I'll send a new report, but this is probably it until I can announce that I'm cancer free.
I have to tell you all that having all of you behind me as I go through this is **HUGE** for me. If you ever have to have the experience you will know what I mean. I just can't thank you all enough!!!
Thanks for being in my corner.
Dave
Dear Family and Friends,
Yesterday was a very long day as we had to be at the hospital by 7:30 am to have my port installed. The port is implanted in my chest to allow chemicals to be dripped in over a three hour process. Installing it took about two hours and then a wait for recovery.
Next we went back to the main hospital so I could get another EKG. We were lucky that a previous patient failed to show so we got in early.
Since we were out by noon and the next appointment wasn't until 4 pm, we went to a nice brewery in Providence for lunch and a couple of pints.
At 4 we met my doctor who answered many questions, gave me new meds and then took a biopsy from my hip bone and and then bone blood to check for additional possibilities of cancer. I don't recommend the bone biopsy!
Nothing more to do now until Tuesday the 20th when I start the CHOP (chemicals). The doctor says the first week I'll feel fine and people rarely feel more than a mild flue like condition. Next is two weeks off and then I begin the three week process again. CHOP on Tuesdays and then three weeks off.
The feeling bad, hair loss, irritability and other side effects progressively increase throughout the six week treatment process and there really isn't anything else to report. Should something crop up that seems newsworthy I'll send a new report, but this is probably it until I can announce that I'm cancer free.
I have to tell you all that having all of you behind me as I go through this is **HUGE** for me. If you ever have to have the experience you will know what I mean. I just can't thank you all enough!!!
Thanks for being in my corner.
Dave
January 13
Dear Family and Friends,
Karen and I, along with son Mike and wife Stacey, spent a long day together. We started off with a Nuclear PET Scan, and ended with the eagerly anticipated meeting with my Oncologist. In between, son Rob was able to join us for a great lunch. Overall, I feel it is good news in that my prognosis is not terminal.
Approximately 1/3 of the people with my cancer make a full recovery, while the other 2/3 are alive, albeit with continuing treatment of some sort. Lymphoma is either Hodgkin or Non-Hodgkin. I have Non. Of that, it is B-cell or T-cell. I have T-cell. In the T-cell category there are many specific types. Mine is in the category of "other" type, which is just a lumping of anything that doesn't have a specific name. Technically it is called Stage 3 Peripheral T-cell Lymphoma Not Otherwise Specified (PTCL-NOS).
On Friday, I will go back in to have a bone marrow biopsy (to rule out the Lymphoma there), a port placement in my chest to make a long term IV access, and possibly a spinal tap to check the fluid. The results of the PET Scan is that it is only in my left chest lymph-node, with a possibility of it being in my spleen and hip. Because it may be there, it is a Stage 3 and not 2. If it turns out it is in my bone marrow, then it would be a Stage 4. However, since the treatment is the same, it doesn't matter if it is there or not.
The treatment is 6 rounds of chemotherapy with each round 3-weeks long. I go in one day, get the chemo, and then 3-weeks later I do it again. Based on some tests that still aren't back, I may have to also get a special shot the day after as well (not determined yet).
Side affects should be mild. Although I will lose my hair (well, the remaining parts), I will mainly just feel fatigued. The normal things of sickness, weakness, etc., are rare, and mostly can be controlled by other medication.
All in all, not good to have cancer, but since it seems treatable, I couldn't be happier. Looks like Karen will just have to put up with me for a while longer.
Next report after my visits next Friday.
Thank you all, my family and friends for your strong show of support. I could not do this without my team!
Dave
Dear Family and Friends,
Karen and I, along with son Mike and wife Stacey, spent a long day together. We started off with a Nuclear PET Scan, and ended with the eagerly anticipated meeting with my Oncologist. In between, son Rob was able to join us for a great lunch. Overall, I feel it is good news in that my prognosis is not terminal.
Approximately 1/3 of the people with my cancer make a full recovery, while the other 2/3 are alive, albeit with continuing treatment of some sort. Lymphoma is either Hodgkin or Non-Hodgkin. I have Non. Of that, it is B-cell or T-cell. I have T-cell. In the T-cell category there are many specific types. Mine is in the category of "other" type, which is just a lumping of anything that doesn't have a specific name. Technically it is called Stage 3 Peripheral T-cell Lymphoma Not Otherwise Specified (PTCL-NOS).
On Friday, I will go back in to have a bone marrow biopsy (to rule out the Lymphoma there), a port placement in my chest to make a long term IV access, and possibly a spinal tap to check the fluid. The results of the PET Scan is that it is only in my left chest lymph-node, with a possibility of it being in my spleen and hip. Because it may be there, it is a Stage 3 and not 2. If it turns out it is in my bone marrow, then it would be a Stage 4. However, since the treatment is the same, it doesn't matter if it is there or not.
The treatment is 6 rounds of chemotherapy with each round 3-weeks long. I go in one day, get the chemo, and then 3-weeks later I do it again. Based on some tests that still aren't back, I may have to also get a special shot the day after as well (not determined yet).
Side affects should be mild. Although I will lose my hair (well, the remaining parts), I will mainly just feel fatigued. The normal things of sickness, weakness, etc., are rare, and mostly can be controlled by other medication.
All in all, not good to have cancer, but since it seems treatable, I couldn't be happier. Looks like Karen will just have to put up with me for a while longer.
Next report after my visits next Friday.
Thank you all, my family and friends for your strong show of support. I could not do this without my team!
Dave