Well insurance cleared much faster than expected and the coordinators have been wonderful in trying to get me in so we can spend the holidays together.
We were given our housing options and will be staying at the McElderry townhouses which is in walking distance to IPOP.
We are not going to do evaluations locally since that will take up too much time waiting for results. The schedule for treatment is as follows:
Nov. 10 & 11 - Evaluations
Nov. 13- Sign Consents
Nov. 14- Line placed, start HiCy
Dec. 15- Hopefully home
Wednesday, October 29, 2008
Monday, October 27, 2008
Preparations
I got a call today from a Blood and Marrow Transplant Coordinator. (Reminder, I am not getting a transplant). I was relieved to finally get a call to move things forward. I will soon get a call from a case manager to discuss the insurance side.
We discussed what to expect with this treatment and what I will be doing in the upcoming weeks.
-I will hopefully be able to do some evaluations here with my local primary care physician. Things like Sinus CT, Chest X-Ray, MUGA/Cardiogram. I will fax the results/disc to them. They will need 4-5 days to review and then I will go to Hopkins for the rest of the testing.
-Hopkins testing will include one day of a physical, history, and bloodwork. Next day will be for me to sign consent forms, and the 3rd day I will have my line placed. I will start treatment the following day after the line is placed. I am glad that treatment does not start the same day the line is placed since last time it was pretty uncomfortable.
-HiCy will be given for 4 days and then I will spend 30 days coming in daily to their IPOP (Inpatient/Outpatient Center). I will soon be connected with a housing coordinator.
-I was reminded again about hair loss and that most everyone will lose their hair.
- I will need some kind of mouth care. The HiCy attacks any rapidly growing cells ex. hair, mouth, lining of the stomach. I will need a note from my dentist stating that I do not have any dental issues since any cavity/infection could spread throughout the body. Luckily, cavities are not much of a problem for me but I am due to go in for a cleaning before treatment begins.
-I was reminded that I am not to be on any blood thinning drugs for at least 7 days before treatment. I guess fish oil is included here as well.
-I will be connected with a social worker to assist with paying for meds and who knows what else.
-Infertility is not much of a risk for my age and for having just one treatment, but needed to be addressed.
I will get an email of everything that was discussed on the phone and then she will call me on Wednesday to figure out what evaluations I can do locally. We discussed scheduling a bit and I confirmed that I want to do this as soon as possible and preferably before the holidays. We are not so concerned about this interfering with the holidays since we will make our own holiday when we are all reunited again.
We discussed what to expect with this treatment and what I will be doing in the upcoming weeks.
-I will hopefully be able to do some evaluations here with my local primary care physician. Things like Sinus CT, Chest X-Ray, MUGA/Cardiogram. I will fax the results/disc to them. They will need 4-5 days to review and then I will go to Hopkins for the rest of the testing.
-Hopkins testing will include one day of a physical, history, and bloodwork. Next day will be for me to sign consent forms, and the 3rd day I will have my line placed. I will start treatment the following day after the line is placed. I am glad that treatment does not start the same day the line is placed since last time it was pretty uncomfortable.
-HiCy will be given for 4 days and then I will spend 30 days coming in daily to their IPOP (Inpatient/Outpatient Center). I will soon be connected with a housing coordinator.
-I was reminded again about hair loss and that most everyone will lose their hair.
- I will need some kind of mouth care. The HiCy attacks any rapidly growing cells ex. hair, mouth, lining of the stomach. I will need a note from my dentist stating that I do not have any dental issues since any cavity/infection could spread throughout the body. Luckily, cavities are not much of a problem for me but I am due to go in for a cleaning before treatment begins.
-I was reminded that I am not to be on any blood thinning drugs for at least 7 days before treatment. I guess fish oil is included here as well.
-I will be connected with a social worker to assist with paying for meds and who knows what else.
-Infertility is not much of a risk for my age and for having just one treatment, but needed to be addressed.
I will get an email of everything that was discussed on the phone and then she will call me on Wednesday to figure out what evaluations I can do locally. We discussed scheduling a bit and I confirmed that I want to do this as soon as possible and preferably before the holidays. We are not so concerned about this interfering with the holidays since we will make our own holiday when we are all reunited again.
Wednesday, October 22, 2008
Waiting
We are waiting now for insurance to clear and for a case manager to contact us. We should hear something by the end of next week, hopefully. In the mean time we are preparing/researching things like housing in Baltimore, head scarves/hats, and gathering our books/movie lists.
I found out that the Tremont Park Hotel has studios and one bedroom suites that are reasonable with the Hopkins discount. I tried to work the AAA discount too but didn't have any luck. I think we may go with the one bedroom with a door, so I can sleep and Andrew can work.
On November 4th I will talk to my OGYN about doing the BRCA2 test that other family members have tested positive for. This is a genetic test that reveals whether I carry the gene that often leads to breast/ovarian cancer. Some people choose not to know this information, but with a young child at home, I feel it is best to know.
CK yesterday was 2920. Feeling OK, I still get slammed with fatigue in the middle of the day and have to rest. Weakness is most noticeable in the usual Myositis areas: getting up from chair, floor, stairs, rolling over, neck, raising arms overhead. What I cannot do: lift head from lying position, lift legs from sitting or lying position, lift arms when overhead from lying position, sit up from lying on back, hamstring curls. What I can do: although contorted, get up from a chair/floor/etc., slowly climb stairs with a railing, and walk, walk,walk. I used to be an athlete, a runner, biker, skier, hiker, practice yoga, pilates, etc. and all of that has helped me know my body and its potential. Walking, stretching, meditating, and using the therapy pool is key for the stiffness and key to calming the racing Prednisone mind.
It's crazy how comfortable we get with our limitations, accept it, and call it normal. So many of us forget what we used to be like and carry on. Although hard, we have to continually remember and strive to get it back!
I found out that the Tremont Park Hotel has studios and one bedroom suites that are reasonable with the Hopkins discount. I tried to work the AAA discount too but didn't have any luck. I think we may go with the one bedroom with a door, so I can sleep and Andrew can work.
On November 4th I will talk to my OGYN about doing the BRCA2 test that other family members have tested positive for. This is a genetic test that reveals whether I carry the gene that often leads to breast/ovarian cancer. Some people choose not to know this information, but with a young child at home, I feel it is best to know.
CK yesterday was 2920. Feeling OK, I still get slammed with fatigue in the middle of the day and have to rest. Weakness is most noticeable in the usual Myositis areas: getting up from chair, floor, stairs, rolling over, neck, raising arms overhead. What I cannot do: lift head from lying position, lift legs from sitting or lying position, lift arms when overhead from lying position, sit up from lying on back, hamstring curls. What I can do: although contorted, get up from a chair/floor/etc., slowly climb stairs with a railing, and walk, walk,walk. I used to be an athlete, a runner, biker, skier, hiker, practice yoga, pilates, etc. and all of that has helped me know my body and its potential. Walking, stretching, meditating, and using the therapy pool is key for the stiffness and key to calming the racing Prednisone mind.
It's crazy how comfortable we get with our limitations, accept it, and call it normal. So many of us forget what we used to be like and carry on. Although hard, we have to continually remember and strive to get it back!
Tuesday, October 14, 2008
A few additions
I thought I would add that I found Dr. Brodsky's discussion of the difference between HiCy and a Autologous (patient stem cell donor) or Allogeneic (second person donor) Hematopoietic stem cell transplantation very interesting. He made a very convincing case that HiCy was not only more effective but much safer. Autologous BMTs are problematic because some of those pesky white blood cells are always getting in there with the stem cells harvested from the patent. This means that the body doesn't forget that it thought Jenny's muscles were an enemy. Allogeneic BMTs are problematic in that they often cause graft-versus-host disease. The more I learn about HiCy the more I think this is the way autoimmune diseases will be treated in the future. All other drug options just treat the symptoms and attempt to slow the rate the immune system does damage. HiCy works by actively restarting the immune system.
Another item we learned is that Copaxone (question #7 below) is only used on MS patients and Dr. Brodsky didn't see any reason to use it on Jen. It would have meant daily injections following the HiCy so we didn't argue with him.
I know this procedure sounds horrendous but compared with what cancer patients go through this is going to be much easier on Jenny. The faster we can get Jenny off the drugs and into remission (no matter how short) the better.
The figure shows Jen's CPK (aka CK) numbers for the past 2 years. As I mentioned in my first blog this is a measure of the rate Jen's muscles are being broken down by her immune system. Normal is typically below 300.
Another item we learned is that Copaxone (question #7 below) is only used on MS patients and Dr. Brodsky didn't see any reason to use it on Jen. It would have meant daily injections following the HiCy so we didn't argue with him.
I know this procedure sounds horrendous but compared with what cancer patients go through this is going to be much easier on Jenny. The faster we can get Jenny off the drugs and into remission (no matter how short) the better.
The figure shows Jen's CPK (aka CK) numbers for the past 2 years. As I mentioned in my first blog this is a measure of the rate Jen's muscles are being broken down by her immune system. Normal is typically below 300.
Meeting Dr. Brodsky
The consult went well today at Hopkins with Dr. Brodsky. He was very knowledgeable, patient with my questions, open to ideas, and most importantly, confident about this treatment for autoimmune conditions. Whether or not my body stops attacking my muscles permanently is an unknown but something we will find out with time. Doing HiCy again is a possibility but that would only be if I was in remission for say 4 years, not if I flared again in a few months. Bottom line...50% or more of MS patients have improved from this and Dr. Brodsky didn't see any reason why I wouldn't follow this trend.
Other good news, with my age, 34, there isn't much risk to ovaries (5-10%). Other positive parts, were that if all goes well and with Dr. Christopher-Stine's OK, we could taper my dose of Prednisone following the HiCy treatment. There is more risk for me in terms of bone loss, cause for cancer, etc. with all the drugs I have been on than with this treatment. The mortality rate with HiCy is less than 1% (among 140 patients none have died), nothing more than what I have dealt with with already.
Good news on the family front, seeing Graham the first month I come home is fine and no problem. My immune system will be able to handle most normal things, but I heard that I have to stay away from people or babies that have just been vaccinated with live vaccines. All those vaccines I had for Africa travel will be long gone.
Also good news, it is OK to have raw fruits and veggies as long as they can be peeled- this means we can continue juicing instead of eating hospital/hotel food etc. OK, I probably won't be doing my normal wheatgrass shots right away, maybe Andrew will be able to bring in some real food. Also, catheter will be smaller than the pheresis one.
Dr. Brodsky went over what to expect: Hair loss, nausea, immunity will go to zero and will come back with the help of meds, and I will probably need a blood transfusion. I was aware of all of this. Hair is nothing in comparison to not moving, being nauseous I can handle, if I get a fever they will give me antibiotics, and I just have to accept the fact that I may need a transfusion. Also, we will have to stay in the Baltimore area for 3-4 weeks and found out that housing is not covered by insurance. Joyjoy.
We then went over polymyositis triggers and how it might affect this treatment if one of the triggers was still unidentified in my body. There are many viral and environmental triggers, and if there was an infection in the body which triggered all of this, I would have cleared it by now. Doing this HiCy would actually introduce tolerance for such infections, meaning if I still had some bacteria in my body my new immune system would be better able to fight it.
We did a strength test and he was surprised by my weak hip flexors and upper arm strength. I did well on balance! But I didn't have a moving child, toy, or dog to walk around=)
So now we wait for Dr. Brodsky to get the verbal OK from Dr. Stine and then we can set up an appointment to do some testing to make sure once again that we can go forward. ex. blood work, pulmonary function (which I have already done), heart/MUGA test, and probably more. So after that day, we set up a day for the line to be put in, and we start treatment. It did not sound like a lot to go through to get started. The longest wait may be for doctors to talk and for insurance to go through. He did mention that this protocol is used so much now that insurance is covering it with less hassle. He said we could possibly start in a month, which is what I would prefer. I am anxious to get this over with before the holidays and before flu season.
I will try to do some video of my graceful self so I can have a strength comparison.
Thank you all for your thoughts, wishes, and offers to help. We have such amazing family and friends and are so grateful.
Other good news, with my age, 34, there isn't much risk to ovaries (5-10%). Other positive parts, were that if all goes well and with Dr. Christopher-Stine's OK, we could taper my dose of Prednisone following the HiCy treatment. There is more risk for me in terms of bone loss, cause for cancer, etc. with all the drugs I have been on than with this treatment. The mortality rate with HiCy is less than 1% (among 140 patients none have died), nothing more than what I have dealt with with already.
Good news on the family front, seeing Graham the first month I come home is fine and no problem. My immune system will be able to handle most normal things, but I heard that I have to stay away from people or babies that have just been vaccinated with live vaccines. All those vaccines I had for Africa travel will be long gone.
Also good news, it is OK to have raw fruits and veggies as long as they can be peeled- this means we can continue juicing instead of eating hospital/hotel food etc. OK, I probably won't be doing my normal wheatgrass shots right away, maybe Andrew will be able to bring in some real food. Also, catheter will be smaller than the pheresis one.
Dr. Brodsky went over what to expect: Hair loss, nausea, immunity will go to zero and will come back with the help of meds, and I will probably need a blood transfusion. I was aware of all of this. Hair is nothing in comparison to not moving, being nauseous I can handle, if I get a fever they will give me antibiotics, and I just have to accept the fact that I may need a transfusion. Also, we will have to stay in the Baltimore area for 3-4 weeks and found out that housing is not covered by insurance. Joyjoy.
We then went over polymyositis triggers and how it might affect this treatment if one of the triggers was still unidentified in my body. There are many viral and environmental triggers, and if there was an infection in the body which triggered all of this, I would have cleared it by now. Doing this HiCy would actually introduce tolerance for such infections, meaning if I still had some bacteria in my body my new immune system would be better able to fight it.
We did a strength test and he was surprised by my weak hip flexors and upper arm strength. I did well on balance! But I didn't have a moving child, toy, or dog to walk around=)
So now we wait for Dr. Brodsky to get the verbal OK from Dr. Stine and then we can set up an appointment to do some testing to make sure once again that we can go forward. ex. blood work, pulmonary function (which I have already done), heart/MUGA test, and probably more. So after that day, we set up a day for the line to be put in, and we start treatment. It did not sound like a lot to go through to get started. The longest wait may be for doctors to talk and for insurance to go through. He did mention that this protocol is used so much now that insurance is covering it with less hassle. He said we could possibly start in a month, which is what I would prefer. I am anxious to get this over with before the holidays and before flu season.
I will try to do some video of my graceful self so I can have a strength comparison.
Thank you all for your thoughts, wishes, and offers to help. We have such amazing family and friends and are so grateful.
Sunday, October 12, 2008
Questions for Consult
Since I am a fan of asking too many questions... I know I will gather many more after Tuesday's consult, but here is the short list.
1. What other myositis patients, if any, do you know of that have done HiCy (Cyclophosphamide)?
2. How much will you and Dr. Christopher-Stine be talking during my treatment?
3. Will you be available throughout the treatment, when will you be away?
4. I know the risks for infection and damage to ovaries, but what are the percentages?
5. When would a blood transfusion be neccessary?
6. Do I continue with same amount of Prednisone throughout treatment? (I am at 20mg now. CK is 3137).
7. How does the drug Copaxone work in training the immune system to hopefully stay in remission?
8. If I have a history of cancer in my family, what are the risks for this treatment causing cancer?
9. Are there any neurological risks?
10. What precautions do we take for the first month home? When do you recommend re-vaccinating?
11. What are all the medications that I will be offered? How do they interact with one another?
If you have any others questions for me or for me to ask, please let me know.
1. What other myositis patients, if any, do you know of that have done HiCy (Cyclophosphamide)?
2. How much will you and Dr. Christopher-Stine be talking during my treatment?
3. Will you be available throughout the treatment, when will you be away?
4. I know the risks for infection and damage to ovaries, but what are the percentages?
5. When would a blood transfusion be neccessary?
6. Do I continue with same amount of Prednisone throughout treatment? (I am at 20mg now. CK is 3137).
7. How does the drug Copaxone work in training the immune system to hopefully stay in remission?
8. If I have a history of cancer in my family, what are the risks for this treatment causing cancer?
9. Are there any neurological risks?
10. What precautions do we take for the first month home? When do you recommend re-vaccinating?
11. What are all the medications that I will be offered? How do they interact with one another?
If you have any others questions for me or for me to ask, please let me know.
Saturday, October 11, 2008
Introduction
If all goes as planned, this blog will keep everyone informed of my wife Jen's successful treatment for Myositis. Myositis is an autoimmune disease where Jen's immune system mistakenly thinks her muscles are an infection. The symptoms are extreme fatigue and muscle loss. Untreated, Myositis would continue to weaken Jen to an extent we don't even want to talk about. For more on Myositis I recommend the Myositis Association's website and related links: http://www.myositis.org/
Jen's treatment started almost 2 years ago with prednisone, which continues today. She has gone through all the "standard" and "slightly more rare" drug options and has received the best care in the world from Dr. Christopher-Stine at Johns Hopkins Medical Center in Baltimore, MD. I can't go through all the details right now, but rest assured that we have tried everything. Jen's doctors are all great; Jen has just been resistant to every treatment. Her immune system continues to attack her muscles at almost the same rate it was 2 years ago. Her CPK numbers (Creatine kinase; a measure of muscle enzyme levels in her blood that indicate the level of ongoing muscle damage) have fluctuated some, but today are only about 50% of where they were 2 years ago. This despite some very strong immunosuppressant drugs. Jen can still walk, but watching her I am continually amazed at how little strength you need to walk once you are standing upright!
Earlier this summer we learned that Jen tested positive for the antibody SRP (Single Recognition Particle), which means she has "anti-SRP positive" Myositis. Folks with this usually get hit hard and fast and are usually much worse off than Jen was at the start. Anti-SRP positive Myositis patients usually respond well to steroids in the beginning and then nothing but Rituxan. Jen took Rituxan (even before the antibody test) but it hasn't done much good. Rituxan was supposed to be the magic drug, but Jen's immune system continues to be in high gear and the muscle weakness continues to progress.
So this brings us (very quickly) to the present. On Tuesday of next week we are going to Johns Hopkins to visit the famous Dr. Brodsky. Dr. Brodsky is famous for developing (with colleagues) a technique called high-dose cyclophosphamide (HiCy). This is a chemotherapy whereby the drug eliminates your entire immune system but leaves stem cells in your bone marrow and blood intact. Stem cells are apparently resistant to cyclophosphamide due to an enzyme that breaks the drug down before it can destroy the cell. These stem cells eventually (beginning about 7 days or so after treatment) "reboot" your immune system. The "new" immune system will hopefully forget that it used to think Jen's muscles were an enemy.
So, on Tuesday we hope to convince Dr. Brodsky that he should try this technique on Jen. As far as we know, no Myositis patient has ever received this treatment. However, Myositis patients have received bone marrow transplants and this is only slightly different (and possibly better.) I think the main reason no one has tried this treatment is that Myositis patients are usually responsive to one of the other treatment options. There are several blogs out there of MS patients who have received HiCy treatment from Dr. Brodsky. Please see Got HiCy? for more information. Also, Chris had MS (and links from there) has been a big help figuring this all out.
Jen's treatment started almost 2 years ago with prednisone, which continues today. She has gone through all the "standard" and "slightly more rare" drug options and has received the best care in the world from Dr. Christopher-Stine at Johns Hopkins Medical Center in Baltimore, MD. I can't go through all the details right now, but rest assured that we have tried everything. Jen's doctors are all great; Jen has just been resistant to every treatment. Her immune system continues to attack her muscles at almost the same rate it was 2 years ago. Her CPK numbers (Creatine kinase; a measure of muscle enzyme levels in her blood that indicate the level of ongoing muscle damage) have fluctuated some, but today are only about 50% of where they were 2 years ago. This despite some very strong immunosuppressant drugs. Jen can still walk, but watching her I am continually amazed at how little strength you need to walk once you are standing upright!
Earlier this summer we learned that Jen tested positive for the antibody SRP (Single Recognition Particle), which means she has "anti-SRP positive" Myositis. Folks with this usually get hit hard and fast and are usually much worse off than Jen was at the start. Anti-SRP positive Myositis patients usually respond well to steroids in the beginning and then nothing but Rituxan. Jen took Rituxan (even before the antibody test) but it hasn't done much good. Rituxan was supposed to be the magic drug, but Jen's immune system continues to be in high gear and the muscle weakness continues to progress.
So this brings us (very quickly) to the present. On Tuesday of next week we are going to Johns Hopkins to visit the famous Dr. Brodsky. Dr. Brodsky is famous for developing (with colleagues) a technique called high-dose cyclophosphamide (HiCy). This is a chemotherapy whereby the drug eliminates your entire immune system but leaves stem cells in your bone marrow and blood intact. Stem cells are apparently resistant to cyclophosphamide due to an enzyme that breaks the drug down before it can destroy the cell. These stem cells eventually (beginning about 7 days or so after treatment) "reboot" your immune system. The "new" immune system will hopefully forget that it used to think Jen's muscles were an enemy.
So, on Tuesday we hope to convince Dr. Brodsky that he should try this technique on Jen. As far as we know, no Myositis patient has ever received this treatment. However, Myositis patients have received bone marrow transplants and this is only slightly different (and possibly better.) I think the main reason no one has tried this treatment is that Myositis patients are usually responsive to one of the other treatment options. There are several blogs out there of MS patients who have received HiCy treatment from Dr. Brodsky. Please see Got HiCy? for more information. Also, Chris had MS (and links from there) has been a big help figuring this all out.
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