Here comes another update. It is now April 1st; day +6. No mouth sores yet, no fevers or infections. My counts went low enough to recieve the blood transfusion this morning. Now we watch for any signs of infection. This, they tell me, is the critical time. So, pray for today, tomorrow and Friday for no infection or fevers. They have procedures and meds to handle each situation that may come, and most will not hinder my going home on Monday. But, I have done really well so far and I'm praying that will continue. My nausea has been reduced significantly, and for that I am SO grateful. I am enjoying TV Land online to help pass the time.
The kids are doing fantastic; Anna even got a friend to color her hair......just a bit lighter, no drama.......I hope. I could only see it from the web cam so far.
Pray for Katherine as she takes the ACT on Saturday morning. This will be her second time and we will probably register her for it in June for her final try. A certain score enables her to be eligble for scholarship money for college.
Ron is getting tired. Juggling the kids and appointments and work and fixing the pool and visiting me and bringing me clean clothes and.......well, you get the picture. He never complains. I could learn from that!
Thanks for the prayers.....please keep them up.
Wednesday, April 1, 2009
Saturday, March 28, 2009
Just thought I would send another update. I went into the bone marrow transplant unit on Monday, March 23rd. Got settled in to my room and around noon they began fluids and pre meds for the Melphlan. I began chewing ice at 4:30 and stopped at 9:30. The Melphlan doesn't take that long to go in, but it tends to create mouth sores and chewing ice helps prevent that. It is supposed to close the capillaries in your mouth so the mouth sores won't happen. They also give you a mouth rinse that you do four times a day, which is also supposed to ward off mouth sores. So, my ice chewing is over, but I am still doing the mouth rinse. Wednesday was a rest day so no meds or anything. I have been walking on the tread mill for about 15-20 minutes which helps with the boredom. Thursday my stem cells were injected back in; about 5 syringes full which took about 30 minutes. No side effects from that either. So, today is Day +2 from the transplant. We are praying for no side effects, like mouth sores, nausea, vomiting, diarrhea or high fevers. They watch for all of that and treat them as they come. They expect my white counts to come down today or tomorrow and then I will get a blood transfusion, which we also pray will have no side effects. If everything continues well, I will go home on Day +10, April 5th.
My white count today is 1.5 and Dr. Reddy expects it to drop again tomorrow. That is about it so far. I will let you know how things are going as the come. Thanks for all the prayers. That is the only thing that keeps me sane in here. Speaking of which, I think I will go and walk on the tread mill again.
My white count today is 1.5 and Dr. Reddy expects it to drop again tomorrow. That is about it so far. I will let you know how things are going as the come. Thanks for all the prayers. That is the only thing that keeps me sane in here. Speaking of which, I think I will go and walk on the tread mill again.
Monday, February 23, 2009
Bitter Sweet!!
Ok, it has been a while since the latest update, not because we did not have any reports, but, we did not have any reports until today.
It is some of the best news so far, but make sure you read the whole update.
As Jack says on 24; "Previously on" Jenny's Update, we had just finished the 4 rounds of Revlimid and were getting ready to embark on the next phase of Velcade and Doxil. That was more potent than the Revlimid by a long shot. By the 3rd round I had started really feeling fatigued and a major hive like rash on my torso. By the end of January, I was feeling tired and ready to get off this stuff for a while.
That's when we had to go to Florida Hospital Walt Disney Cancer Institute (the one 5 minutes from our house). We had a sit down with Dr. John Edwards. He told us that we need to do a battery of tests to see where the treatment has taken us since last May but as far as he was concerned, it is time to do the Autologous Stem Cell Transplant.
This is where my own stem cells are brought to my blood, and filtered out, and frozen in order to put them back in. This is the safest of all of the stem cell and bone marrow transplants.
So, today, we met with him for over an hour and he went over all of the tests. Bottom line: Everything is normal as can be. The drugs worked. He said that the pathologist looked at the bone marrow biopsy slide and said that if she did not know that it came from a Multiple Myeloma patient, she would say it was a normal sample. But if she looked really really close, she could see a couple of cells that were atypical.
In the words of the doctor, "You are as close to Zero as you can be without being a Zero".
So....you probably have the same question as I did. "Why do I need to do the transplant?"
Well suffice it to say; it is the best time to "clear out ALL of the cancer cells and to infuse my own Stem Cells back into me" while I have the disease down to almost Zero. So, here is my next 2 months calendar:
February 26th & 27th: Go into the Florida Hospital for an overnight stay to have a port put in my chest. Receive Cytoxin. (This will make my hair fall out).
February 28 - March 8th: At home, Ron has to inject Neupogen 1 time a day for 8 days (this makes my bone marrow create massive amounts of stem cells so that they leak into my blood stream. They say that my bones will ache.
March 9th - March 13th: This is the week I go to the doctors office and they will run my blood through a machine that is programmed to remove the stem cells and the blood is then returned to me. Sort of a blood dialysis machine. This could take 1 to 4 days if everything goes well.
March 14th - March 22nd : Holiday...a week off.
March 23rd - April 10th: I enter the hospital, and for the first 2 days I receive Melphelan, the Multiple Myeloma cell killing drug. Then on day 3, I start the re-infusion of my stem cells.
The process takes almost 3 weeks in the hospital because my immune system is essentially nonexistant. They say I will feel like I have Strep Throat since the drug tears up my throat and makes me feel like I have a the flu.
Believe it or not, I can have visitors. It is an isolation area so don't come if you have the sniffles.
Also, no flowers or plants are allowed due to bacteria.
Then after I get home, I have to go 3 times a week for 2 weeks to make sure everything is okie dokie.
Thanks for all of the prayers and cards and encouraging words.
Jenny
It is some of the best news so far, but make sure you read the whole update.
As Jack says on 24; "Previously on" Jenny's Update, we had just finished the 4 rounds of Revlimid and were getting ready to embark on the next phase of Velcade and Doxil. That was more potent than the Revlimid by a long shot. By the 3rd round I had started really feeling fatigued and a major hive like rash on my torso. By the end of January, I was feeling tired and ready to get off this stuff for a while.
That's when we had to go to Florida Hospital Walt Disney Cancer Institute (the one 5 minutes from our house). We had a sit down with Dr. John Edwards. He told us that we need to do a battery of tests to see where the treatment has taken us since last May but as far as he was concerned, it is time to do the Autologous Stem Cell Transplant.
This is where my own stem cells are brought to my blood, and filtered out, and frozen in order to put them back in. This is the safest of all of the stem cell and bone marrow transplants.
So, today, we met with him for over an hour and he went over all of the tests. Bottom line: Everything is normal as can be. The drugs worked. He said that the pathologist looked at the bone marrow biopsy slide and said that if she did not know that it came from a Multiple Myeloma patient, she would say it was a normal sample. But if she looked really really close, she could see a couple of cells that were atypical.
In the words of the doctor, "You are as close to Zero as you can be without being a Zero".
So....you probably have the same question as I did. "Why do I need to do the transplant?"
Well suffice it to say; it is the best time to "clear out ALL of the cancer cells and to infuse my own Stem Cells back into me" while I have the disease down to almost Zero. So, here is my next 2 months calendar:
February 26th & 27th: Go into the Florida Hospital for an overnight stay to have a port put in my chest. Receive Cytoxin. (This will make my hair fall out).
February 28 - March 8th: At home, Ron has to inject Neupogen 1 time a day for 8 days (this makes my bone marrow create massive amounts of stem cells so that they leak into my blood stream. They say that my bones will ache.
March 9th - March 13th: This is the week I go to the doctors office and they will run my blood through a machine that is programmed to remove the stem cells and the blood is then returned to me. Sort of a blood dialysis machine. This could take 1 to 4 days if everything goes well.
March 14th - March 22nd : Holiday...a week off.
March 23rd - April 10th: I enter the hospital, and for the first 2 days I receive Melphelan, the Multiple Myeloma cell killing drug. Then on day 3, I start the re-infusion of my stem cells.
The process takes almost 3 weeks in the hospital because my immune system is essentially nonexistant. They say I will feel like I have Strep Throat since the drug tears up my throat and makes me feel like I have a the flu.
Believe it or not, I can have visitors. It is an isolation area so don't come if you have the sniffles.
Also, no flowers or plants are allowed due to bacteria.
Then after I get home, I have to go 3 times a week for 2 weeks to make sure everything is okie dokie.
Thanks for all of the prayers and cards and encouraging words.
Jenny
Tuesday, November 25, 2008
Here comes the next phase!!!
A few things have happened since the last update so here goes. After 2 months (rounds) of the drug Revlimid, Dr. Hajdenburg said that I had a Very Good Partial Response. After 4 rounds, it was about the same. He then scheduled a consultation at Moffitt Cancer Center in Tampa before he would decide on the next course of action. The trip to Moffitt was to educate me on the possible future Stem Cell Transplant.
While Moffitt is an incredible place for the treatment of cancer, I was not at all satisfied with what they wanted to do. They wanted to immediately put me in the Autogenic Stem Cell Transplant Program. Now, since we have done our research, we were asking “Why would they want to do that right now?”
One week later, Ron & I attended a Multiple Myeloma Research Foundation, MMRF, seminar in Downtown Tampa. The top Oncologists in the country were there to speak.
Suffice it to say, that after the seminar, we knew the direction that we thought was correct. Then last week we met with Dr. Hajdenburg again, and he laid out the next course of action and it was EXACTLY the same course that we had in mind.
He said that since the new P.E.T. scan and blood work came back “clear”, and since I responded very well to the one drug, that it was time to move on to the newest FDA approved drug, Velcade. Velcade finished the Clinical Trials and was released in June 2008 to be given as a front line drug therapy for Multiple Myeloma. (watch this link for an interesting story).
Velcade alone has had very promising results, but Dr. Orlowski from M.D. Anderson in Houston has combined Velcade and Doxil for even better responses. So, that is what I am going to be on next.
Starting today, I will be given an injection 2 times per week for 3 weeks, off for 10 days, then another 21 day cycle. This will continue into 2009 for as long as they feel it is needed. The nice thing about this is that the Dexamethasone will be reduced from 40mg to 4 mg which will hopefully stop my abdominal swelling and weight gain. The side effects can include nausea, vomiting, constipation, diarrhea, neuropathy, and hand and foot disease (which is blistering and redness on the hands and feet). I reacted well to the Revlimid with very few side effects, and some of those side effects listed were the same. Doxil can cause hair thinning, or it may not. So, we will just have to wait and see what happens with that.
The update on my back surgery is that I am gaining strength daily, and I am beating Dan on the Wii Fit (on some things :-) )
I am now walking up and down steps normally and not the “Jenny 2 step shuffle”. I was able to accompany Ron & Brent & Jeannie Riker in September on the trip to Chicago and I walked on the Magnificent Mile!! The numbness and tingling is still there in my feet and legs but it is getting better all of the time.
Thank you all for praying!!! Please don’t stop!!
Jenny
While Moffitt is an incredible place for the treatment of cancer, I was not at all satisfied with what they wanted to do. They wanted to immediately put me in the Autogenic Stem Cell Transplant Program. Now, since we have done our research, we were asking “Why would they want to do that right now?”
One week later, Ron & I attended a Multiple Myeloma Research Foundation, MMRF, seminar in Downtown Tampa. The top Oncologists in the country were there to speak.
Suffice it to say, that after the seminar, we knew the direction that we thought was correct. Then last week we met with Dr. Hajdenburg again, and he laid out the next course of action and it was EXACTLY the same course that we had in mind.
He said that since the new P.E.T. scan and blood work came back “clear”, and since I responded very well to the one drug, that it was time to move on to the newest FDA approved drug, Velcade. Velcade finished the Clinical Trials and was released in June 2008 to be given as a front line drug therapy for Multiple Myeloma. (watch this link for an interesting story).
Velcade alone has had very promising results, but Dr. Orlowski from M.D. Anderson in Houston has combined Velcade and Doxil for even better responses. So, that is what I am going to be on next.
Starting today, I will be given an injection 2 times per week for 3 weeks, off for 10 days, then another 21 day cycle. This will continue into 2009 for as long as they feel it is needed. The nice thing about this is that the Dexamethasone will be reduced from 40mg to 4 mg which will hopefully stop my abdominal swelling and weight gain. The side effects can include nausea, vomiting, constipation, diarrhea, neuropathy, and hand and foot disease (which is blistering and redness on the hands and feet). I reacted well to the Revlimid with very few side effects, and some of those side effects listed were the same. Doxil can cause hair thinning, or it may not. So, we will just have to wait and see what happens with that.
The update on my back surgery is that I am gaining strength daily, and I am beating Dan on the Wii Fit (on some things :-) )
I am now walking up and down steps normally and not the “Jenny 2 step shuffle”. I was able to accompany Ron & Brent & Jeannie Riker in September on the trip to Chicago and I walked on the Magnificent Mile!! The numbness and tingling is still there in my feet and legs but it is getting better all of the time.
Thank you all for praying!!! Please don’t stop!!
Jenny
Wednesday, September 17, 2008
An Awsome Report!!
You ARE still praying!!!
Dr. Hajdenburg said that it is one of the best possible test results for a Multiple Myeloma patient. He looked at 2 weeks of blood tests and a urine test and promptly came in and said that the results were EXCELLENT!!
What does it mean?
I have been on Revlimid and Dexamethosone for 2 cycles (21 days per cycle) and he said that it is a "very good partial first response". (Doctor speak for YEAH!!!) So much that he is not going to add Velcade to the treatment at this time. Velcade would cause bad side effects that I just don't need yet. People that have a "very good partial first response" with Revilimid and Dexamethosone alone is less than 10%. He was very excited! He said that the next time I see him in 6 weeks, I will have completed 4 cycles, and it will be time to do another Bone Marrow Biopsy.
He is also setting up a trip to Moffit in Tampa for a consultation. This will be for the future, if the stem cell transplant or the bone marrow transplant is needed. He wants us to know what is possilbly in the future.
Dr. Hajdenburg said that it is one of the best possible test results for a Multiple Myeloma patient. He looked at 2 weeks of blood tests and a urine test and promptly came in and said that the results were EXCELLENT!!
What does it mean?
I have been on Revlimid and Dexamethosone for 2 cycles (21 days per cycle) and he said that it is a "very good partial first response". (Doctor speak for YEAH!!!) So much that he is not going to add Velcade to the treatment at this time. Velcade would cause bad side effects that I just don't need yet. People that have a "very good partial first response" with Revilimid and Dexamethosone alone is less than 10%. He was very excited! He said that the next time I see him in 6 weeks, I will have completed 4 cycles, and it will be time to do another Bone Marrow Biopsy.
He is also setting up a trip to Moffit in Tampa for a consultation. This will be for the future, if the stem cell transplant or the bone marrow transplant is needed. He wants us to know what is possilbly in the future.
I was released by two doctors last week. Dr. Burry, the surgeon and Dr. Portee, the rehab doctor. Dr. Burry said I will have no permanent limitations, but it will take at least a year to heal. We asked the size of the tumor and he said it was about the size of a golfball, totally encompassing the T10. He said he just couldn't get over how much the tumor had engulfed the spinal cord. He was also amazed that I had no walker, brace or cane. He also said the 15% of the tumor he had to leave could not be detected on the x-ray we brought in, but you wouldn' be able to see it on just an x-ray, it would have to be on an MRI, which brought up our next question. Can I ever have an MRI again? He said that the material the pins and rods are made of, titanium, has been put in the middle of an MRI machine and it goes no where when it is turned on. So, yes I can have an MRI, it will just be blurry where the pins and rods are. Also, the plasmacytoma melts away with radiation so he is not concerned about the 15% that he had to leave.
Dr. Portee said I was doing extremely well, and he saw no reason to keep seeing me unless I thought I needed something from him any time in the future. He agreed with the time frame of one year for the swelling to go down around my spinal cord and just urged me to continue with the physical therapy, especially strenthening my core. So that is exactly what I am doing. Daniel is my coach, timing me on my core exercises and cheering me on when I score well on the balance, yoga, and aerobic games on the Wii Fit....even when I beat him. He's such a good sport.
And finally, a dear friend is training for a 26 mile marathon and is raising money for cancers like mine. Below is the link, please donate if you feel led.
http://pages.teamintraining.org/cfl/wdw09/kdottore
Jenny
Friday, August 15, 2008
I need to make a clarification to my last blog. It seems that the aggressive chemo that I mentioned might not be for a while, if at all.
I was confused (couldn't imagine why) as to the timeline of my treatment. I will try to outline the the treatment (as best as I know it) for you below.
The first thing that you (and I) have to remember is that I have a disease that has no cure but is treatable. I have stage I Multiple Myeloma and as my doctor has said, there are a few different "camps" of thought processes on how to treat the disease.
He starts the patient out on Revlimid, Dexamethosone and Aspirin, and a drug called Velcade. Unfortunately, Velcade causes the patient to have numbness and tingling in the extremities (along with other side effects). As you know I already have that due to the tumor that was pressing on my spinal cord, so he has not put me on the Velcade yet but really wants me on it.
Velcade has 8 to 11 treatment cycles. Each cycle is 21 days. So it alone is about 7-8 months of treatments. So the faster I can get on it the better.
I then get re-assessed as to the next treatment, if any. Clinical trials have shown different results, from remission, to no progression, to still needing treatment.
It is then I would be treated with a chemo and a stem cell transplant. But, that is further down the road, a road I may never need to travel.
Our next step is to learn more about Velcade and its side effects and to see if it would interfere with my rehabilitation up to now. Either way we need to deal aggressively with the Multiple Myeloma.
That's it for now.
Keep up the prayers for us!!!
Jenny
I was confused (couldn't imagine why) as to the timeline of my treatment. I will try to outline the the treatment (as best as I know it) for you below.
The first thing that you (and I) have to remember is that I have a disease that has no cure but is treatable. I have stage I Multiple Myeloma and as my doctor has said, there are a few different "camps" of thought processes on how to treat the disease.
He starts the patient out on Revlimid, Dexamethosone and Aspirin, and a drug called Velcade. Unfortunately, Velcade causes the patient to have numbness and tingling in the extremities (along with other side effects). As you know I already have that due to the tumor that was pressing on my spinal cord, so he has not put me on the Velcade yet but really wants me on it.
Velcade has 8 to 11 treatment cycles. Each cycle is 21 days. So it alone is about 7-8 months of treatments. So the faster I can get on it the better.
I then get re-assessed as to the next treatment, if any. Clinical trials have shown different results, from remission, to no progression, to still needing treatment.
It is then I would be treated with a chemo and a stem cell transplant. But, that is further down the road, a road I may never need to travel.
Our next step is to learn more about Velcade and its side effects and to see if it would interfere with my rehabilitation up to now. Either way we need to deal aggressively with the Multiple Myeloma.
That's it for now.
Keep up the prayers for us!!!
Jenny
Tuesday, August 12, 2008
Update for August 12, 2008
We begin round two of the Revlimid today along with the steroid and aspirin. No bad side effects so far. We found out the elevated calcium last time was due to the Multiple Myeloma, not the Revlimid. Dr. Hadjenberg says I am doing very well.
What I did NOT realize is that I will be doing four rounds of the Revlimid, not three and he is anticipating an aggressive chemo after that. I asked him if it was probable that I would do the aggressive chemo round, loosing my hair and all that, and he said yes. This was a bit of news I had not anticipated. So, after round four of the Revlimid, I will get evaluated for the aggressive chemo.
He wants to see my physical therapy much improved ( don't we all) before he changes any treatment. The numbness in my legs is about the same, though I walk unassisted unless I go out. I use the cane more for self protection than for balance. The brace has been able to come off for a week and that is also a blessing. However, I have to ease into being without it 100%. When my back gets fatigued or achey, I put it back on. That will be the standard operating procedure I suppose until I can totally do without it.
The physical therapist I see once a month says our goal for this month is to be brace and cane free by my next appointment the beginning of September. No new exercises, just doing them now without the brace or cane.
Thanks for all the prayers. Ron is a rock, though I cannot say the same for me. That must be why he is a rock, so he can be my rock to lean on. Pray for him as well. I think sometimes the job of the caregiver is harder than the patient.
What I did NOT realize is that I will be doing four rounds of the Revlimid, not three and he is anticipating an aggressive chemo after that. I asked him if it was probable that I would do the aggressive chemo round, loosing my hair and all that, and he said yes. This was a bit of news I had not anticipated. So, after round four of the Revlimid, I will get evaluated for the aggressive chemo.
He wants to see my physical therapy much improved ( don't we all) before he changes any treatment. The numbness in my legs is about the same, though I walk unassisted unless I go out. I use the cane more for self protection than for balance. The brace has been able to come off for a week and that is also a blessing. However, I have to ease into being without it 100%. When my back gets fatigued or achey, I put it back on. That will be the standard operating procedure I suppose until I can totally do without it.
The physical therapist I see once a month says our goal for this month is to be brace and cane free by my next appointment the beginning of September. No new exercises, just doing them now without the brace or cane.
Thanks for all the prayers. Ron is a rock, though I cannot say the same for me. That must be why he is a rock, so he can be my rock to lean on. Pray for him as well. I think sometimes the job of the caregiver is harder than the patient.
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