(This all took place two weeks ago - Nov 30th, I'm just catching up now.)
That evening I had a fever of about 100.5. Now it's common to get a mild fever when when udnergoing radiation treatment, and my reckoning was that the Haematoma from the fall had puhed it a bit higher. However, the bone marrow transplant handbook tells one to cotact the resident Haem-onc fellow when the fever gets too high, so after some 'discussion' with Rona (wives always look after our interests better than we do!), that is what I did - even though I knew with sinking heart what the upshot would be - that's the problem with having some medical knowledge - go to the nearest emergency room. The nearest one happened to be our community hospital Hillcrest, in retrospect I should have made the some what longer drive to the Clinic but then hindsight is always 20/20.
Matt drove me there and we arrived about 8.30 pm. At 12.30 am I got put in a room; at 1'3o am I saw the doctor. By this time my fever had disappeared, but the doc insisted on doing blood tests anyway. A little later a tech came to draw blood, which she did after a rather perfunctory skin prep. I ventured mildly that If she was doing a blood culture a more elaborate prep may be in order - it's amazing really how afraid most doc's are to push their weight around- but she assured me that she had preped with the very latest commercial gadget. My white count was negative, so they sent me home, arriving back at about 4.00 am.
On my way to the clinic on Wednesday (The 2nd) for radiation treatment they called me to say that my blood culture was growing something and they would admit me...
(to be continued)
Frank
Sunday, December 13, 2009
Friday, December 11, 2009
commedy of errors 2
Im sure this is not original, but when I saw this cover,
I couldn't help but doing a little editing!
Frank
Commedy of errors
I have not written in my blog for the last two weeks and there is a good reason for this. A simple incidence led to a 'comedy of errors', and then the law of 'unintended' consequences, kicked in.
Ruth and Cassia went back home on the Sunday evening (Nov.29th.) My snoring must have been particularly bad on Sunday night, in any case Rona removed her self to the farthest corner of the house from our bedroom. Waking up at about 7am I decided to take a tub bath, which I do when I'm feeling particularly low or achy. I started the bath and promptly forgot about it. Now the upstairs bathroom is on a landing between two upstairs bedrooms, and the bath drew attention to itself by the noise of gently flowing water. Th tub had overflown, the water had worked its way out of the bathroom, onto the landing and had gently begun to run down the stairs like a nascent Niagara. "Oh my gosh" I said" I've got to clean this up before Rona finds out about it?" Actually those were not my words, but on a blog designed to be read by the whole family they will have to do.
I put my foot on the top step and slipped on the water. I put out my hand for the banister, but unfortunately, I had left some sheets there to be put a way. The net result was that I ended up at the bottom of the flight of stairs clutching some Martha Stewart patterned sheets, with a crash that awoke the whole house; and me wondering what bone I hadn't broken! Luckily none, but I did have a huge bruise over by left hip and buttock, Which later took 4 units of blood to replace!
By daughter Ruth suggested I should post a picture of it on this blog, but the same considerations that prevented me from posting my original language prevent me from doing this. No point in putting the younger female readers off sex for life, as a view of my scraggy ass would be sure to do!.
I will continue the saga a little later.
Frank
Ruth and Cassia went back home on the Sunday evening (Nov.29th.) My snoring must have been particularly bad on Sunday night, in any case Rona removed her self to the farthest corner of the house from our bedroom. Waking up at about 7am I decided to take a tub bath, which I do when I'm feeling particularly low or achy. I started the bath and promptly forgot about it. Now the upstairs bathroom is on a landing between two upstairs bedrooms, and the bath drew attention to itself by the noise of gently flowing water. Th tub had overflown, the water had worked its way out of the bathroom, onto the landing and had gently begun to run down the stairs like a nascent Niagara. "Oh my gosh" I said" I've got to clean this up before Rona finds out about it?" Actually those were not my words, but on a blog designed to be read by the whole family they will have to do.
I put my foot on the top step and slipped on the water. I put out my hand for the banister, but unfortunately, I had left some sheets there to be put a way. The net result was that I ended up at the bottom of the flight of stairs clutching some Martha Stewart patterned sheets, with a crash that awoke the whole house; and me wondering what bone I hadn't broken! Luckily none, but I did have a huge bruise over by left hip and buttock, Which later took 4 units of blood to replace!
By daughter Ruth suggested I should post a picture of it on this blog, but the same considerations that prevented me from posting my original language prevent me from doing this. No point in putting the younger female readers off sex for life, as a view of my scraggy ass would be sure to do!.
I will continue the saga a little later.
Frank
Sunday, November 29, 2009
Chemotherapy -Erbitux - monoclonal
Erbitux, also known as Cetuximab or C225 is the chemotherapy drug I receive every Wednesday. Strictly speaking it is a targeted therapy of monoclonal antibody type.
Until recently most chemotherapy drugs were drugs that targeted rapidly diving cells - cancer cells being some of the most rapidly dividing cells
Targeted therapy is about identifying other features of cancer cells, and designing drugs that attack only these cell features , thus only the cancer cells are attacked, and not normal cells cutting down on the side effects. Each targeted therapy works a little bi differently, interfering with the cells ablity to grow, divide, repair or communicate with other cells. Targeted drugs come in three broad categories:
1. Those that identify the special features of the outside wall of the cancer cells.
2. Several target special internal features of the cell
3. Several attack the blood vessels feeding the tumor itself - the anti-angiogenesis drugs.
As mentioned already Erbitux attacks the external target receptor and is thus a monoclonal antibody. see http://en.wikipedia.org/wiki/Monoclonal_antibodies
I have now had two doses of the drug, anministered intravenously over a two hou period. On both occasions I have felt very ill that night, But I swear the next day the tumor felt smaller! (Probably only wishful thinking)
Martha Stewart and Erbitux
Interestingly this is the drug that got Martha in trouble for insider trading! She heard that the FDA were not going to approve the dug for it's original use, and so dumped her shares! Sadly, for her,if she had never got the hot tip or had hung onto here shares, she would have made a killing, because shortly there after it became approved for colon and rectal cancers, and Has proven highly effective for treatment of squamous cell carcinomas of the head and neck.
Frank
Until recently most chemotherapy drugs were drugs that targeted rapidly diving cells - cancer cells being some of the most rapidly dividing cells
Targeted therapy is about identifying other features of cancer cells, and designing drugs that attack only these cell features , thus only the cancer cells are attacked, and not normal cells cutting down on the side effects. Each targeted therapy works a little bi differently, interfering with the cells ablity to grow, divide, repair or communicate with other cells. Targeted drugs come in three broad categories:
1. Those that identify the special features of the outside wall of the cancer cells.
2. Several target special internal features of the cell
3. Several attack the blood vessels feeding the tumor itself - the anti-angiogenesis drugs.
As mentioned already Erbitux attacks the external target receptor and is thus a monoclonal antibody. see http://en.wikipedia.org/wiki/Monoclonal_antibodies
I have now had two doses of the drug, anministered intravenously over a two hou period. On both occasions I have felt very ill that night, But I swear the next day the tumor felt smaller! (Probably only wishful thinking)
Martha Stewart and Erbitux
Interestingly this is the drug that got Martha in trouble for insider trading! She heard that the FDA were not going to approve the dug for it's original use, and so dumped her shares! Sadly, for her,if she had never got the hot tip or had hung onto here shares, she would have made a killing, because shortly there after it became approved for colon and rectal cancers, and Has proven highly effective for treatment of squamous cell carcinomas of the head and neck.
Frank
Thursday, November 26, 2009
Thanksgiving
Granddaughter Cassia and I greet thanksgiving with gummy smiles !Today is thanksgiving day.Whereas at first sight I might not appear to have too much to be thankful for what with the recent diagnoses, not being able to enjoy a thanksgiving meal today (Actually I will enjoy it, just not in the form most of the rest of you will be taking it in) I really do have a huge amount to be thankful for.
It was almost over a year and a half ago that I was given the direst of prognoses. 4-12 weeks. I was considered too old for for marrow ablation therapy and marrow transplant. The risks were just too high. Luckily on my death bed I met Dr. Amili who gave it a whirl. So here I am a few months later with my Leukaemia in remission, and my Graft v. Host under control. Admitedly if I had had my druthers I would have passed on the throat cancer...
However, see the photo above, I have been able to see my granddaughter - my daughter Ruth came over for thanksgiving - which if nothing else would have been worth it!
However the big lesson I have learnt from all this is the importance of friends and family. I got the other day a card signed by my friends at the Midpines hickory competition. It is impossible to overstate how much this means to me - or to anyone else in a similar position!
The support of friends and family are priceless, and here I am especially thankful for Rona, who has put up with a old grouch over the past few months!
Like most Americans I had also become somewhat addicted to to over consumption. My recent illness's - helped by the economic meltdown - have certainly shown me that consumption is a false god!
I was originally scheduled to spend thanksgiving with Avery's (Matt's girlfriend) family, but with the radiation therapy treatment etc. That proved impossible. So Matt and Avery, and Sarah and Jack are down in Athens, whereas Rona, Ruth, Cassia and I are up in Cleveland
So to all of you a Happy Thanksgiving, and please spare a thought and a prayer for our troops oversees.
Frank
Friday, November 20, 2009
Squamous cell Carcinoma of the head and neck. Images and staging.
-----------------------
The best overall description that I have found is at:
http://emedicine.medscape.com/article/1289986-overview
My tumor is shown in the X-rays on the left or above. The two on the left are MRI's; the tumor is seen at the base of the tongue in the top image, and in the bottom image is seen extending into the pharynx.
The two images on the right are PET scans which highlight metabolic activity. The tumor shows up as a white blob, and the two images are taken in roughly the same planes as the MRI. Most importantly, there is no lymph node activity.
My tumor is staged as T3, N0, M0 for what exactly this means see the link above.
There are several different causes given for this kind of cancer, one of which I show in cartoon form at the top!
Frank
Masks and radiation: Simulation
Tues 17th of Nov. 2009
The previous week I had had my mask made, now was the time to try it out in a dry run - the so called simulation- and and make sure that all the 'ports' for the radiation had been calculated correctly. The mask itself was an extremely tight fitting one that clamps over the face, shoulders and upper chest. They lay you flat on your back, put in a mouth piece and then literally clamp you to the table with the mask. No movement at all is possible! For the mildly claustrophopic like myself, it is not very pleasant, for the truly claustrophobic it must be alarming. AnywayI survived my fifteen minutes.
The idea of course is to make sure that your head is positioned in exactly the same spot for each session. Radiation is so precise nowadays that it is delivered in a narrow beam to the tumor from several different angles, so that the skin and non affected soft tissues only get the least possible dose of radiation. I'll try and get a photo of this and post it next week. I start my radiation proper next Monday on Nov. 23rd.
The previous week I had had my mask made, now was the time to try it out in a dry run - the so called simulation- and and make sure that all the 'ports' for the radiation had been calculated correctly. The mask itself was an extremely tight fitting one that clamps over the face, shoulders and upper chest. They lay you flat on your back, put in a mouth piece and then literally clamp you to the table with the mask. No movement at all is possible! For the mildly claustrophopic like myself, it is not very pleasant, for the truly claustrophobic it must be alarming. AnywayI survived my fifteen minutes.
The idea of course is to make sure that your head is positioned in exactly the same spot for each session. Radiation is so precise nowadays that it is delivered in a narrow beam to the tumor from several different angles, so that the skin and non affected soft tissues only get the least possible dose of radiation. I'll try and get a photo of this and post it next week. I start my radiation proper next Monday on Nov. 23rd.
Monday, November 16, 2009
Stomach Tubes and PEGs
Monday, November 16th 2009
On Thursday last week I had a gastroscope examination and the placement of a feeding tube in my stomach. (A PEG for short) The problem was I was getting quite severe nausea and had difficulty keeping my food down, as well as it being difficult for me to swallow. Under (Heavy!) sedation they passed a tube down through my esophagus, and into my stomach and duodenum. There were a few ulcers on the wall of the esophagus, but other wise nothing too serious.
Then with the help of local anesthetic (and the heavy sedation - no point in being a hero unless it is absolutely necessary!) they put a tube through my abdominal wall and into my stomach. This allows me to feed my self without the inconvenience of it going through my mouth. I can't remember whether I mentioned it or not in a previous post, but the previous week -6th Nov. I had had all my teeth extracted prior to starting the radiation, so this had also added to my difficulties of feeding my self via. my mouth. At a rough estimate $250,000 of oral work over the years all removed in less than an hour!
I now feed myself via this PEG tube by taking a funnel and pouring in my canned nutrition.
I've been doing it for three days now and can notice the difference right away. First my throat is not nearly as painful, and secondly I'm getting back a little bit of energy. One problem had been was that I was really suffering from Malnutrition from my inability to get food down. Also much of the nausea has decreased.
No medical appointments to day! Tomorrow I am going to get my radiation mask fitted, and on Nov 23rd. - all being well I will start my radiation.. 5x a week for 7 weeks.
I'll write more later on this week.
Frank
On Thursday last week I had a gastroscope examination and the placement of a feeding tube in my stomach. (A PEG for short) The problem was I was getting quite severe nausea and had difficulty keeping my food down, as well as it being difficult for me to swallow. Under (Heavy!) sedation they passed a tube down through my esophagus, and into my stomach and duodenum. There were a few ulcers on the wall of the esophagus, but other wise nothing too serious.
Then with the help of local anesthetic (and the heavy sedation - no point in being a hero unless it is absolutely necessary!) they put a tube through my abdominal wall and into my stomach. This allows me to feed my self without the inconvenience of it going through my mouth. I can't remember whether I mentioned it or not in a previous post, but the previous week -6th Nov. I had had all my teeth extracted prior to starting the radiation, so this had also added to my difficulties of feeding my self via. my mouth. At a rough estimate $250,000 of oral work over the years all removed in less than an hour!
I now feed myself via this PEG tube by taking a funnel and pouring in my canned nutrition.
I've been doing it for three days now and can notice the difference right away. First my throat is not nearly as painful, and secondly I'm getting back a little bit of energy. One problem had been was that I was really suffering from Malnutrition from my inability to get food down. Also much of the nausea has decreased.
No medical appointments to day! Tomorrow I am going to get my radiation mask fitted, and on Nov 23rd. - all being well I will start my radiation.. 5x a week for 7 weeks.
I'll write more later on this week.
Frank
Wednesday, November 11, 2009
The story so far...
I'll post a more detailed 'story so far' later on.
Spring 2008
MDS (Mylo dysplastic Syndrome) high grade diagnosed
Acute Myelocytic Leukaemia (AML) diagnosed
In Hospital for one month undergoing Chemo, and Marrow ablation therapy
AML in remission
9/10/2008 - Bone marrow transplant
Feb 2009 MDS recurs - remaining stem cells are transfused
MDS goes into remission, but Severe Acute Graft v. host syndrome (GVHS) develops
On TPN (Intravenous feeding) for 3 months together withhigh dose steroids and immunosuppressive drugs
Cytomegalovirus (CMV) diagnosed. Start chemo therapy for this
Start to get improvement, but develop pain in the throat, and coughing up blood
Numerous test later....
October 2009 Squamous Carcinoma of the tongue and Throat diagnosed. Will be treated by Radiation and Chemotherapy (50% two year survival rate.)
Nov 6th All my teeth extracted prior to radiation
Nov 10th Radiation Mask made
Nov 12. Will enter hospital for placement of a Gastric Feeding tube
Spring 2008
MDS (Mylo dysplastic Syndrome) high grade diagnosed
Acute Myelocytic Leukaemia (AML) diagnosed
In Hospital for one month undergoing Chemo, and Marrow ablation therapy
AML in remission
9/10/2008 - Bone marrow transplant
Feb 2009 MDS recurs - remaining stem cells are transfused
MDS goes into remission, but Severe Acute Graft v. host syndrome (GVHS) develops
On TPN (Intravenous feeding) for 3 months together withhigh dose steroids and immunosuppressive drugs
Cytomegalovirus (CMV) diagnosed. Start chemo therapy for this
Start to get improvement, but develop pain in the throat, and coughing up blood
Numerous test later....
October 2009 Squamous Carcinoma of the tongue and Throat diagnosed. Will be treated by Radiation and Chemotherapy (50% two year survival rate.)
Nov 6th All my teeth extracted prior to radiation
Nov 10th Radiation Mask made
Nov 12. Will enter hospital for placement of a Gastric Feeding tube
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