You know, when I come to hospital I like to hope for the best but expect the worst. So for the last 24 hours I have been trying to stay positive but at the same time I have been trying to steel my mind for any nasty surprises. Fortunately, so far it has been a breeze but it is only my first day and I'm sure that things will get harder as time goes by.
So why was today easier than expected? Well to start with the PICC line catheter was 100 times more comfortable than the central line catheter that I had for the harvest. This will hopefully be a benefit that will remain for the whole two and a half weeks, and I must admit that I can't see any reason why this wouldn't be the case.
The second reason is that I didn't actually start the chemo today. The protocol changes slightly for every patient, but I am not actually going to do any chemo until Thursday or day -5. Today all I had was a dose of rituxan. Rituxan is used to target B cells which are one of the five types of white blood cells or lymphocytes in the blood. They didn't expect any side effects, and none were realised. Well no side effects anyway, but I do think I am out of the woods now. Tomorrow, there is no chemo again and no Rituxan either. Instead I will have rabbit ATG, which is used to target the T cells, another lymphocyte, in a similar way to how Rituxan attacks the B cells.
Another plus is I have a much better room than I had for mobilisation. The best rooms with nicest view are east facing over the lake. My room is north facing, but is probably the second best view and I have two big windows as opposed to one small window. However, the room is slightly smaller, but this doesn't bother me at all. I will get some video for you tomorrow. Until then, stay well:)
Showing posts with label rituximab. Show all posts
Showing posts with label rituximab. Show all posts
Wednesday, April 4, 2012
Friday, November 4, 2011
Busy day.
I had three medical appointments today, and I have to say I feel like I'm in the twilight zone. Why? I hear you ask. Well, I didn't have to wait more than five minutes to see any of them! The other point to note is that none of them were bad, which is becoming more common as I grow in confidence and get on the front foot with my treatments.
I started out with my tremor doc. A week ago I would have thought I had pretty much reached the end of the road in terms of what my stimulator was capable of. I was wrong. I had an adjustment and although the improvement was only minor, it was still an improvement. So, I am now thinking how much more can I get out of this. I guess that only time will tell.
While I was there we talked about stem cell transplantation and other drugs for CIDP. It was good to get his feedback and opinion even if as I suspected he was not well versed on the subject. His thoughts were that I was extremely knowledgeable about the subject and that any doctor would have to take my wishes into account.
After that I went and had a chat with my chemist. I wanted to get her thoughts on rituximab, and we ended up chatting for about half an hour. One problem that I overlooked about the drug was that it is insanely expensive. About $3500 a treatment, and is not covered by the PBS. So if I can't get on a trial, or get a pharmaceutical company or hospital to pay for it, it is probably not going to happen.
After that I had to run off to the mercy hospital to have a 'stealth' CT scan. Stealth is basically a way that they can superimpose the images of the CT scan over the top of my old MRI scans from a year and a half ago to check the lead placements from my DBS surgery. I had to question the relevance. Seeing as everything is working really well, surely the leads are in a good spot? Anyway, I had the scan, and I'm sure if something is wrong, they will call me.
Lastly, it was off to the physio for a bit of neck work, which felt great. All in all I feel it was a good day for me from a medical point of view. Until next time, stay well:)
I started out with my tremor doc. A week ago I would have thought I had pretty much reached the end of the road in terms of what my stimulator was capable of. I was wrong. I had an adjustment and although the improvement was only minor, it was still an improvement. So, I am now thinking how much more can I get out of this. I guess that only time will tell.
While I was there we talked about stem cell transplantation and other drugs for CIDP. It was good to get his feedback and opinion even if as I suspected he was not well versed on the subject. His thoughts were that I was extremely knowledgeable about the subject and that any doctor would have to take my wishes into account.
After that I went and had a chat with my chemist. I wanted to get her thoughts on rituximab, and we ended up chatting for about half an hour. One problem that I overlooked about the drug was that it is insanely expensive. About $3500 a treatment, and is not covered by the PBS. So if I can't get on a trial, or get a pharmaceutical company or hospital to pay for it, it is probably not going to happen.
After that I had to run off to the mercy hospital to have a 'stealth' CT scan. Stealth is basically a way that they can superimpose the images of the CT scan over the top of my old MRI scans from a year and a half ago to check the lead placements from my DBS surgery. I had to question the relevance. Seeing as everything is working really well, surely the leads are in a good spot? Anyway, I had the scan, and I'm sure if something is wrong, they will call me.
Lastly, it was off to the physio for a bit of neck work, which felt great. All in all I feel it was a good day for me from a medical point of view. Until next time, stay well:)
Tuesday, November 1, 2011
Cure for HIV?
Whilst searching the net for information on stem cell transplantation I came across this article.
Stem cells and HIV
Yes, by all accounts this man has been cured of HIV! However, there is a down side. Only 1 - 3% of all people of European descent carry the CCR5 delta 32 mutation. Those people then need to consent to donation and be healthy enough to donate. Do the math, there are far more people with HIV. There is also the compatibility issue.
The second point to note is that to put a patient through a very risky and life threatening procedure is unethical, seeing as the quality of life and longevity are almost normal with the anti-viral out on the market now. As the experts say, "HIV no longer has to be a death sentence".
Still, a cure would be nice. In this case the patient was treated for leukemia, they just managed to find a transplant donor with the delta 32 mutation, and this gives us a valuable research tool. We already have drugs that attack individual proteins on the surface of cells. For example, a drug I am researching for my CIDP, rituximab attacks the protein CD20, hopefully destroying the cells that cause my neuropathy.
So it is probably only a matter of time before they develop a drug to attack CCR5. Seeing as this article is 2 years old, and the Berlin Patient was treated 4 years ago, that cure may be closer than you think. Stay Well:)
Stem cells and HIV
Yes, by all accounts this man has been cured of HIV! However, there is a down side. Only 1 - 3% of all people of European descent carry the CCR5 delta 32 mutation. Those people then need to consent to donation and be healthy enough to donate. Do the math, there are far more people with HIV. There is also the compatibility issue.
The second point to note is that to put a patient through a very risky and life threatening procedure is unethical, seeing as the quality of life and longevity are almost normal with the anti-viral out on the market now. As the experts say, "HIV no longer has to be a death sentence".
Still, a cure would be nice. In this case the patient was treated for leukemia, they just managed to find a transplant donor with the delta 32 mutation, and this gives us a valuable research tool. We already have drugs that attack individual proteins on the surface of cells. For example, a drug I am researching for my CIDP, rituximab attacks the protein CD20, hopefully destroying the cells that cause my neuropathy.
So it is probably only a matter of time before they develop a drug to attack CCR5. Seeing as this article is 2 years old, and the Berlin Patient was treated 4 years ago, that cure may be closer than you think. Stay Well:)
Tuesday, October 25, 2011
Time to Stick it to The Man!
Well stick it to the disease anyway. Since my mega kidney surgery in 2006, I decided that enough was enough and and I had to hit all my problems head on and really aggressively. Sort of a live well or die trying mentality. So back then I took the following steps:-
1st. I changed my nephrologist and became super strict and diligent about my treatments. My treatment plan was changed and I went from having an attack of kidney stones every six months to having only two in five years.
2nd. My depression, that I haven't talked about much, but I plan too, needed to be addressed properly. So I went on anti-depressants and had three years of counselling. Depression will never completely go away, but if the medical fraternity were to give it a name they would say it is in remission.
3rd. I tried to hit my CIDP hard. I went on immune suppressive drugs (cell cept and prednisolone), had plasmspheresis and IvIg treatment all at the same time. Sadly, this was only mildly effective at best.
4th. I had brain surgery for my tremor. This was probably the biggest thing I have ever done and wow was it worth it! Now on a good day I can drink a coffee with one hand.
I feel that with most of these disorders I have reached the end of the road in terms of available treatments and for the most part I am happy with the results I have achieved. The one exception being the CIDP. Whilst the treatments are not as invasive as brain surgery, they are not pleasant and have their fair share of side effects that I have been exposed to. I keep with them for fear of slipping backwards.
However, it has come to my attention recently that I have not yet hit the end of the road. A couple of new treatments are now available that sound encouraging. The first is a drug called rituximab, which attacks a protein that exists on B-cell preventing the immune system from working properly.
The second is stem cell transplantation. They can now cultivate stem cells from your own or a donors bone marrow or placenta blood which strongly goes to negate the ethical issues of embryonic stem cell transplants. However, the procedure is long, hard and dangerous. Naturally, my doctors would like to try rituximab first, but I belief that life is for living so if rituximab doesn't work you can rest assured I will look at the stem cell option. Live well or die trying. Until next time, stay well:)
1st. I changed my nephrologist and became super strict and diligent about my treatments. My treatment plan was changed and I went from having an attack of kidney stones every six months to having only two in five years.
2nd. My depression, that I haven't talked about much, but I plan too, needed to be addressed properly. So I went on anti-depressants and had three years of counselling. Depression will never completely go away, but if the medical fraternity were to give it a name they would say it is in remission.
3rd. I tried to hit my CIDP hard. I went on immune suppressive drugs (cell cept and prednisolone), had plasmspheresis and IvIg treatment all at the same time. Sadly, this was only mildly effective at best.
4th. I had brain surgery for my tremor. This was probably the biggest thing I have ever done and wow was it worth it! Now on a good day I can drink a coffee with one hand.
I feel that with most of these disorders I have reached the end of the road in terms of available treatments and for the most part I am happy with the results I have achieved. The one exception being the CIDP. Whilst the treatments are not as invasive as brain surgery, they are not pleasant and have their fair share of side effects that I have been exposed to. I keep with them for fear of slipping backwards.
However, it has come to my attention recently that I have not yet hit the end of the road. A couple of new treatments are now available that sound encouraging. The first is a drug called rituximab, which attacks a protein that exists on B-cell preventing the immune system from working properly.
The second is stem cell transplantation. They can now cultivate stem cells from your own or a donors bone marrow or placenta blood which strongly goes to negate the ethical issues of embryonic stem cell transplants. However, the procedure is long, hard and dangerous. Naturally, my doctors would like to try rituximab first, but I belief that life is for living so if rituximab doesn't work you can rest assured I will look at the stem cell option. Live well or die trying. Until next time, stay well:)
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