Steve Chubb
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04/28/10 - Hi to all,
A very quick note to let everyone know that the latest PET-CT and Bone Marrow Biopsy came back showing no Lymphoma of any kind! I've been doing very well, and the Doctor has taken me off all restrictions. It is nice to be feeling so good, and will now be starting an exercise program to help build back strength and endurance. Already a lot of that has returned.
Hope that this is finding all of you well too.
Thanks again for all of the thoughts and prayers,
Steve (and Loraine)
02/24/10 - Hi to all,
It has been a long time since an update, but there hasn't been anything really new to report until this afternoon. Last Friday (the 19th) Loraine and I went back down to Ann Arbor for a full day of testing etc. They also removed the Neo-Star Chest Catheter, so I am free of tubes for the first time since August. How great it is to be able to take a real shower! Anyway, they just called with the results of the Pet Scan, Bone Marrow Biopsy and blood tests. Everything is clear, and they could not detect any Mantle Cells in places that they should not be.
Originally we were supposed to go back to Ann Arbor at the 60 day mark from transplant for more tests, but the Doctor has indicated that we can forget that one and jump to the 100 day mark. Apparently everything is looking so good that we don't have another appointment until April 23rd for the next Bone Marrow Biopsy in Ann Arbor. There won't be any need for another Pet Scan at that time either. When Loraine heard that we didn't have to do the 60 day appointment, she shouted "Great, that means that we can go to Florida." The Doctor's response was an immediate "No!" I guess that he does not want us that far away in case some type of problem develops. Loraine can't feel too bad, because spring is getting real close anyway. (Do you think that she will buy that load of positive thinking!)
I have been feeling very good, and everyday is a little better. Every week the blood counts get closer to normal. Actually, the white cells and platelets are normal now. The red cells and hemoglobin levels are still low, so that just means that I don't have much stamina and get tired very easily. But again, every week those numbers have been going up a couple tenths of a point. I can go out of the house without a mask or gloves now, and as long as I'm careful (staying away from sick people) I can do most normal things. My appetite is coming back, and most of the time I can eat about anything that I want. Even my taste buds are improving, and the jittery stomach and tingling toes are subsiding. I'm down to only one antiviral pill twice a day, and I'll be on that for the next year. That is really an accomplishment since, at the peak, I was doing 12 pills a day.
That's about it from this end. Once again, we thank all of you for your thoughts and prayers. Hope that all is well with all of you.
Life is good!
Steve and Loraine
02/04/10 - Hi to all,
The best news is that we are home from having had the bone marrow transplant in at the U of M Hospital in Ann Arbor. It is sooooooo great to be back home. All of the folks at the Hospital were superior people and certainly are a dedicated bunch of folks, but they don't replace family, friends and home.
Things went probably about as I expected that they would. We were warned that this would not be a walk in the park, and that it would be a lot harder than anything that I had experienced before, so we were ready for whatever. The only real difficulties were the nausea, vomiting, fevers, and inability to eat without getting sick. Just waiting around for the next shoe to drop was also difficult. They said that I would have terrible mouth sores, but I kept rinsing with salt and baking soda every hour or so, and only developed a couple of the sores. That was a huge blessing! I was always able to walk around the circle in the hospital transplant ward, and did between 1.5 and 3 miles per day. Although sometimes were a lot slower than others, I still kicked most of those other old peoples butts. I am so very thankful that I could donate my own stem cells. I saw what the folks were going through who had to do donor transplants, and that made mine look like a cake walk.
I had to be temperature free for 24 hours before they would let me go home. We were shooting to go home on the 3rd of February, but on the evening of the 2nd I developed a temperature of 38 degrees Celsius. That is exactly the mark that they declare that you officially have a temperature. The nurse would not take a bribe to report a 37.9 degree temperature, so I was pretty bummed out. I guess that I was doing enough pissing and moaning that the next day the Doctor agreed to release me anyway. We got home about 5:30pm on the 3rd. Since then things have been going very well. I slept much better last night, have very little indigestion, have been eating much better, and feel like I might actually survive all of this.
The next major appointment is on the 19th of February which is day 30 (since the transplant) back in Ann Arbor. I have to limit hazardous contacts (Like most of you!) between now and then. They will be doing another bone marrow biopsy, Pet Scan, vital organ checks, etc. It is a full day of tests, but we should be able to be back home that night. The testing is repeated at the 60 day, 100 day, 6 month, and one year marks. If nothing bad shows up, I should be able to go to half year and yearly checkups from then on.
Obviously all of your thoughts and prayers have been working, and they a so much appreciated. I'm not beyond begging...so if you would still please keep it up. The first year is the most critical period for Mantle Cell Lymphoma, and if we can get though that period of time, the relapse rates go down greatly every year after that. I'm sure that most of you are tired of hearing about all of this stuff, so I'll try and keep the reports limited to the major events.
Also, please give lots to cancer research! What an eye opener to see how much suffering is out there, and it is certainly not age dependent. If I had been diagnosed as little as six months earlier, the treatment at that time would have given me six months to two years of life expectancy. Having been diagnosed when I was, insurance now pays for the new Nordic treatment and they are suggesting the possibility of 7> years out. That is how quickly things are changing in cancer research and treatment.
Thanks again to all of you, and hope to be seeing you soon,
Steve and Loraine
01/31/10
Well, hopefully the worst is over now and Steve is climbing out of the depths of hell. Sure seems like touch and go for a couple of very long days. The doctor had said it was going to get pretty ugly for a few days and he most certainly wasn't whistling dixie. Past three days have been extremely hard ones, but today he is showing much improvement and a willingness to live. He still is not able to eat much and energy is very low. We first thought we could go home Tuesday, but the doctor is thinking later in the week, ugh! What ever it takes! We miss our family, friends and sharing our morning cups of coffee together over looking Townline Lake. It is all about the simple things in life and there really is "No place like home." - Loraine
01/18/10
So far things are going well with Steve. I am the one who is pissing and moaning about my ........ bone spur. No shock on that one, right? I am still limping and dragging a leg. I look like Quasi Motto looking for some darn bell to ring. Anyway, more chemo today, heavier stuff tomorrow and then stem cell transplant on the 20 th His appetite has dropped as expected. Now, instead of chicken, mashed potatoes, gravy, etc. he gets ice-cream candy bars,cookies and sandwiches. He is nauseated at time, but thank goodness there is a drug for that. He is still able to walk the seventeen times around the unit which is one mile. He is receiving excellent care twenty-four hours a day. We have one week down and two more to go, but who is counting? - Loriane
01/06/10 - Hi to all,
Hope that your Christmas and New Year were great! Loraine an I had a very nice relaxing time being home and mostly alone. We sat around and watched the lake freeze…a nasty job, but someone has to do it. Lisa's kids were staying with their Dad at Loraine's Dad's cottage for the week after Christmas, so we got to see them some. Because Kailey had a runny nose they weren't allowed in our house, but Loraine saw them everyday and played outside with them.
Other than that, we went down to Ann Arbor from December 17th through the 23rd so that they could take the Picc Line out and put a Neostar Chest Catheter in. They were then able to collect over 14 million of my stem cells (minimum needed were 3 million) so that is excellent. The extras help to insure that they will be able to get the stem cells to graft after the transplant.
Yesterday, January 5th, we went back to Ann Arbor for another bone marrow biopsy, blood tests and a pre-transplant meeting. We were given more specific information regarding the bone marrow transplant process and given a calendar of events. Dr. Levine said that it will be a lot more intense than anything that I have experienced before, but he kept insisting…"It is nothing that you can't get through."
The next step is that I enter the hospital at the U of M on January 12th. Chemo starts on the 13th and goes through the 19th. Four of those days I get four doses (3-4 hours each) of Chemo. On the 19th I get one final dose of super Chemo that is supposed to finish the job of totally killing my immune system. On the 20th they will inject my stem cells back into my blood, and after that it will be a matter of sitting around and waiting for them to graft. During that time I can also expect to receive several platelet and red blood cell infusions, and basically feel like s*$#. The 20th is called "day zero" for all other time line references. Depending on how things go, we should be home by the end of the month? After that we go back to Ann Arbor at the 30 day, 100 day and 1 year marks for checkups and bone marrow biopsies. It is just yearly checkups from then on. The overall prognosis is still very good, and basically if I can get through the next two years Mantle Cell free, the chances of this being "a cure" are greatly increased.
The real bummer (for Loraine especially) is that they said no traveling for the first 100 days after the transplant. That means no Florida this year! If everything goes well, we should be able to go to Florida next year after the one year checkup, that is after January 20th, 2011. It will be a good goal for Loraine to focus on.
That's about it from this end. We will have the laptop computer while at the Hospital, so we should have access to email. If anything unexpected happens I'll try and let you know, but otherwise I probably won't be doing too much writing.
Thanks again to all for the kind thoughts and prayers. Hope that this New Year will be great for all!
Steve (and Loraine)
12/17/09 - Hi to all,
We trust that all of you are doing well and are prepared for the up coming Christmas Holidays. We have certainly had our share of excitement around here. Our computer has been crashing on a fairly regular basis since about June. I have been able to keep it running with the help of brother-in-law Barry and Lisa's friend TJ, but it sounded like it might be time to make a change. That is one reason for my not having sent information out to everyone lately. Since Microsoft was again making a change that would require us to buy all new software anyway, we did something amazing. As Loraine says, we "went to the dark side" and got an IMac computer. When not in the hospital, I've spent that last few weeks making the change over. Loraine is less than OK with all of this. I was able to get the old computer running well again (for awhile anyway) and she now has her old friend back, and it resides in her photo office. I'm working on getting the Mac to have a virtual PC on it, with the old Windows XP, so she will be able to have all of the old programs that she feels comfortable with on the new machine. In the mean time we have a marriage made in heaven. She is upstairs on "her" computer all day, and I'm on the Mac. We do see each other when she comes down for our "date nights" in the evenings.
In the meantime, we went down to Grand Rapids on December 8th in order to beat the winter storm that was coming. Our Uncle and Aunt (Bruce and Janet) took us out to a great dinner, and then we checked into the Hope Lodge for the evening. I was able to see the great place where Loraine has been staying during our pervious visits to Spectrum Hospital. The winter storm came in as predicted, and on the 9th through the 11th of December I did the LAST rounds of Chemo. No negative issues at all. Loraine said that it was time to leave when I apparently started "bonding" too well with the nurses. I don't know what she meant by that? The storm cleared out just in time for our trip home. Anyway, we have been home since then, and things have been going very well. I am off from the Coumadin blood thinner (yea!) pending the bone marrow transplant. I have to give myself three shots in the stomach every morning with Neupogen in order to stimulate stem cell growth for the harvesting process, and that has so far been very tolerable. They say that I could have lots of muscle and bone paid during this time, but so far there has been very little.
Early this afternoon we leave for the UofM Hospital in Ann Arbor. (First a Macintosh computer and now the UofM. What is this world coming too?) We will be staying in a Microtel Inn about 3 miles from the hospital while we are down there. Tomorrow, December 18th, we go into the Hospital at 6:00am in order to have the old Picc Line taken out of my arm and replaced with a more substantial chest catheter. The rest of the day we spend in training sessions on how to care for the catheter, but it sounds like about the same thing that nurse Loraine has been doing the last four months with the Picc Line. (Loraine actually claims that she has gone beyond the RN status and now has her WIFE degree.) We will spend the 19th and 20th at the motel, with only visits from the Visiting Nurses for dressing changes, and the rest of the time we will be on our own to explore Ann Arbor. Hopefully the Neupogen shots will be getting my blood counts up to the point where there won't be too much of a threat of catching something from outside sources. We'll have to wait and see.
At about 6:00am on the 21st, we go back to the Hospital and, if my blood counts are where they need to be, we will start the stem cell "harvesting" process. It is about a four hour process where they take the blood out of one chest catheter port, run it through a machine to extract the stem cells, and then put the blood back into another chest catheter port. The rest of the day they spend "counting" stem cells. They need about 5 million stem cells for every kg of my weight. The whole process could take as little as one day, or as many as four days to complete. After they are finished, they will freeze my stem cells and we will be allowed to go home for Christmas.
Sometime during the first week or two of January we will be heading back to Ann Arbor for the actual bone marrow transplant. That is when they will kill my entire immune system, and then put my stem cells back into my blood. The stem cells somehow know where to go, and end up back into my bone marrow. The doctors monitor things to hopefully make sure that I don't catch some disease, and also make sure that the stem cells are reproducing properly. This whole inpatient process is expected to take about three weeks, and Loraine will be staying at the motel during that time. After that, we go home until we return to Ann Arbor for two day checkups at the 30 day and 90 day marks. If everything goes well, Loraine might be able to see palm trees for a few weeks at the end of March or the first of April? The doctors say this is a "maybe?"
Anyway, we are getting closer to the end goal, and that is a good feeling. Things have gone remarkably well during this whole process, and we are both so thankful for that during this Holiday Season. Lots to look forward to next year!
Again, we trust that this finds all of you well, and we wish all of you a very merry Christmas.
Thanks for all of your continuing thoughts and prayers,
Steve and Loraine
11/21/09 - Hi to all,
We heard from Dr. Brinker this morning (Sat, Nov 21). He indicated that
the bone marrow biopsy came back 100% Mantle Cell free. They ran a number
of additional tests, trying to duplicate what they found back in July,
and they all came back negative. He indicated that I have very good
looking bone marrow!
This does not mean that there aren't any Mantle Cells at all, but simply
that they cannot detect any. It also means that we are still on track
for the last round of Chemo in Grand Rapids in about 2.5 weeks, and
then on to Ann Arbor for the bone marrow transplant. Since the biopsy
came back ok, I will be able to be my own donor. There is no possibility
of rejection, and as long as the stem cells reproduce, it should (hopefully)
mean long term remission. Again, at this time the doctors have indicated
that there is no "cure" for this, but the clinical trials
with this "Nordic" treatment have 66% still surviving after
5-7 years. Of that group, 100% are still Mantle Cell free! After 10
years they figure that they can declare it a "cure."
We would like to thank everyone for all of your thoughts and prayers.
Obviously they seem to be working, so keep them coming!
Steve (and Loraine)
10/31/09 - Hi to all,
Another update, and it may be really good news. We went to Grand Rapids
for the four day round of Chemo (the fourth of six total rounds) on
Wednesday. Usually they give me two very high doses of Chemo, wait 24
hours, and then two more very high doses. The Doctor came to visit us
and advised that since I just had a birthday that it put me officially
into the "old" people category (61 years and >). The clinical
trials called for a slightly revised protocol for people in that category.
They give a slightly lower dose of Chemo, but they can be given back-to-back
without waiting the 24 hours. As a result, we got out of the Hospital
after only three days. In the trials, the results were all the same
with either group.
The other really good news is that Dr. Brinker heard from the folks
at the U of M in Ann Arbor. They are the ones who will be doing the
bone marrow transplant, and they have been getting all of Dr. Brinker's
reports on me. Since I have apparently been doing so well, and handling
the Chemo so well, they think that the Mantle Cell may already be in
remission. They want him to do another bone marrow biopsy on November
17th, just prior to the next one day Chemo treatment (#5) in Greenville.
If that test comes back clear of Mantle Cell, then I might be able to
skip the last three day Chemo session (#6) in Grand Rapids, and go directly
to Ann Arbor to start the bone marrow transplant process. That should
be around the end of November or first of December. The entire process
lasts about 2 months, which includes the follow-up appointments. Loraine
is so excited because she is seeing the possibility of palm trees in
our future for the month of March...maybe?
Hope that this finds all of you well and free of all of the bad bugs
flying around,
Steve Chubb (and Loraine)
10/21/09 - Thought you all might like
to know,
I received a call from Ann Arbor today. The transplant specialist said
that brother Ken was a "perfect match" with me for the stem
cells. She did not have results for Mike yet.
I did get some clarification about the stem cell transplant. She advised
that after the 6th round of Chemo (in early December) I will do another
CAT Scan and/or PET-C Scan. After that, they will do another bone marrow
biopsy. She said that they have had excellent luck with the new Nordic
style Chemo treatment that I have been going through, and the success
rate has been outstanding. If the Chemo has done it's job, and there
is no observable Mantle Cell, then I will be cleared for an "Autologus"
stem cell transplant. The Autologus transplant is the one where they
would use my own stem cells.
If after an Autologus transplant, Mantle Cells redeveloped in the bone
marrow, then they could still opt to do a donor transplant.
If they do find Mantle Cells present immediately after the 6th round
of Chemo, then the transplant would have to come from a donor (Ken...Please?),
and the Autologus transplant would not be possible. The stem cells are
extracted from the blood, and not from the bone marrow, and it is done
over about a two or three day period in Ann Arbor.
If Ken is still willing, this is great news. The rejection rate for
a matching family member is tremendously lower than that of a matching
stranger. Hopefully it will not have to come down to that anyway. There
is no rejection complication with my own stem cells, and it would save
brother Ken the nuisance, discomfort, and the time away from work.
Anyway, we thought that you would like to know,
Steve (and of course...Loraine)
10/07/09 - Hi to all,
A short update...
Things have been going very well and I have been feeling good. Yesterday
the Doctor said that my cell counts were back to normal levels, so my
body has responded well and the bone marrow is producing well. We received
the clearance for the next round, so Loraine and I went to Greenville
for the 6 hours of outpatient chemo today. Everything went very smoothly.
No negative reactions, and other than being pooped out, I feel OK. The
last 2 times it was on the 8th day after chemo that I needed platelet
infusions, so that is a probability and something to look forward to.
The next step is another 4 day chemo inpatient treatment in Grand Rapids
in 3 weeks.
Having figured things out with all of the new data, it appears that
the bone marrow transplant should take place in early January?
So far it has been a lot easier than we had anticipated, and we are
very thankful for all of the thoughts and prayers. Obviously they are
working!
Thanks,
Steve and Loraine
9/23/09 - Hi to all,
Upon popular (or not so popular) demand, here is another update.
Things went well in Grand Rapids last week. When we entered the Hospital,
we thought that we would be there for six days and have a total of six
Chemo treatments, which are called "Hidac" which is short
for "High Dose Cytarabine" or "High Dose Ara-C."
After reviewing the protocol from the Nordic clinical trials, Dr. Brinker
decided to only do four days and four treatments, as that seemed to
have the best results during the trials. Due to this change of events,
we went home last Saturday evening instead of Monday as expected. The
Hospital folks treated Loraine and me like royalty, and the stay went
very well and was "well tolerated."
Loraine stayed at the Hope Lodge in Grand Rapids, which is about one
mile from the Spectrum-Butterworth Hospital. It is a new building that
was first class all the way, and it's purpose is to house out-patients
and/or relatives of patients who live at some distance from Grand Rapids.
She was able to walk to and from the Hospital, and seemed to enjoy her
"alone" time too. The best of all...It was FREE!
Before we left the Hospital, Dr. Brinker indicated that within several
days (a couple of days from now) I could be expected to crash and burn.
At that time I may have to go into the hospital to have one or more
blood transfusions in order to get the red and white cell counts up.
Monday's blood tests showed a low immune system (of course), but tomorrow
is the next blood test and we will see. I feel reasonably good now.
Thanks to all who have sent cards and emails. I may not always immediately
respond, but that doesn't mean that I don't appreciate hearing from
you folks!
"Also, we are taking a poll. Loraine keeps saying that I look like
"Mr. Potato Head" now, but I don't see any real resemblance.
Feel free to Check out the attached photo file and see who you agree
with.
Thanks again,
Steve and Loraine
9/16/09 - Hi to all,
A very quick note...
We saw the Doctor today. He said that my blood work looked very good.
Immune system was back up to normal. I've been feeling great for the
last five days or so. That means that it is time to be hit again with
more Chemo. Tomorrow at 9:00AM I will be checking into Spectrum-Butterworth
in Grand Rapids for inpatient Chemo. I get treatment on the 1st, 3rd
and 5th days, and should be released on the 6th day. I think that the
treatment is supposed to last all day (in two parts) on each of the
treatment days.
Loraine is staying at the Hope Lodge which is about a 15 minute walk
from Spectrum. It is supposed to be a very nice place, and best of all,
it is free!
Anyway, that is all that we know now. It isn't supposed to be fun, but
still very tolerable. The Doctor said that just sitting around the Hospital
for 6 days is the worst part.
We'll let you know how it went after we get back.
Steve
8/27/09 - Hi to All,
Another update...
Tuesday was my first Chemo treatment. The first 10 minutes were pretty
rough. It got very dizzy and nauseous. Tried to vomit several times
and got the shakes. They said that this was good because the chemicals
were doing their job. After that, they gave me some meds to help eliviate
the symptoms they worked, but it pretty well knocked me out for the
rest of the day. I slept through most of the seven hours of treatment.
It wasn't a bad thing, but I sure don't like the feeling of being out
of control. Oh well, it could have been a whole lot worse.
Feel pretty good now. Just a little nauseous at times. They say that
in about 3-4 days I can expect to get really tired and feel like a truck
ran over me. After that it should get better...and then we start all
over again.
Loraine and I apparently understood the info incorrectly regarding the
treatment plan. It is over the same time span, but less frequent than
we had understood. Apparently I will now I simply have blood tests every
week, and after three weeks we meet with Doctor Brinker in Greenville
and he looks at the progress (cell count etc.) If everything looks like
they want it to, I go to Grand Rapids Butterworth/Spectrum Hospital
the next day. That will probably entail a stay of five days for intensive
Chemo. Then I go home for three weeks, after which I do the outpatient
treatment again. This is repeated for six total treatments over an 18
week period. Then, on to the bone marrow transplant in Ann Arbor.
Our nephew Kyle (Major in the Air Force) is coming here on Friday for
a couple of nights. It is his first trip back to Michigan in awhile.
Daughter Lisa and her gang might be here for the weekend if all of them
are healthy. Should be just about the time that I am feeling down, but
they all know that I might just drift off in the middle of a conversation
and then get up to go to bed. It should be nice to have them here.
Thats about it this time. Hope that this finds all of you well.
Thanks to all of you again. Friends and family mean a lot!
Steve (and Loraine...of course)
08/12/09 - Hi to all...again,
Loraine and I went to see Dr. Brinker again yesterday in Greenville.
He had reviewed the second opinion from the Ann Arbor doctors, and said
that the two options for treatment were waiting and watching, or starting
Chemotherapy now. Outcomes with this type of cancer are about the same,
regardless of which way we go. His best guess is that waiting and watching
would last between 3 and 6 months before symptoms developed and treatment
would then be necessary. In the meantime it would require regular blood
tests, CT and PET scans. We opted to start treatment now and try and
hit this thing head on.
I still need a Muga Scan to check heart function. That is going to be
done in Greenville on August 18th. We don't expect any problems from
that, and Chemotherapy should start about one week after that (two weeks
from now).
The regiment will start with 3 weeks of outpatient Chemotherapy (8 hours
once per week), which will be done in Greenville. That will be followed
by five days of very intensive inpatient Chemotherapy in the Grand Rapids
hospital. This process is then repeated, doing it a total of at least
6 times, and will last about 24 weeks in total. This is a newer type
of treatment which is called the "Nordic" style.
After that, we start the bone marrow transplant procedure. This is done
by harvesting my stem cells, killing my immune system and reinserting
my own stem cells. This happens over about a 4 week period in the Ann
Arbor Hospital. After that it is a wait to see if the stem cells grow,
and if there are any signs of the Mantle cells. Hopefully there will
not be any need for additional treatment. If all of this works, it takes
about 6 months to 1 year to get back to "normal." Since Mantle
Cell Lymphoma is currently never "cured" it requires lots
of follow up, but the prognosis looks good for many years.
This is probably a lot more info than anyone wanted, but I have heard
from so many really great friends and most have asked to be kept up
to date. Loraine and I do really appreciate all of the support. I've
literally heard from folks from all over the world, and some whom I
haven't seen in decades. How great is that! All in all, this has really
been an interesting learning experience, and maybe one that others can
benefit from in some way or other.
Thanks again,
Steve (and Loraine)
08/05/09 - This is another long report,
but many folks indicated that they wanted to have updates, so here it
is...
My Dad volunteered to go down to Ann Arbor with us yesterday and act
as a third pair of ears. We received a second opinion regarding treatment
options. An audio tape of the session was also made, which will probably
be very helpful for future review. The really good news is that last
Friday's PET-CT Scan results showed no tumor involvement in any of the
lymph nodes or other organs. Dr. Levine said that he had never seen
that before with Mantle Cell Lymphoma. Apparently the Mantle Cell was
caught really early, and it is "only" in the blood and bone
marrow. (A very good example of why we should have yearly physicals
that include complete blood workups.) By definition, if the involvement
includes the bone marrow it is automatically considered stage 4 melanoma.
While that is bad, it is good, because the new transplant techniqe has
just recently been removed from "experimental treatment" list,
and accordingly our insurance now pays for bone marrow transplants for
stage 4 lymphoma.
Dr. Levine and his staff went into great detail (2.5 hours worth) regarding
the recommended treatment options. He will take my case to the entire
"team" on Thursday, but he is pretty sure that their recommendation
will be the newest "Nordic" style Chemotherapy and then follow
that up with a Bone Marrow Transplant (developed in Germany.)
On August 11th we have another appointment with Dr. Brinker (Greenville
office) in order to hear his review of everything and his final recommendation.
Basically, Dr. Levine concurred with Dr. Brinker's original treatment
recommendation, so I think that we know what to expect. Treatment should
start right away.
Treatment consists of at least 18 weeks of outpatient Chemotherapy in
Grand Rapids (or maybe Greenville?). After that, if the Mantel Cell
count is then gone from the blood, and reduced in the bone marrow, they
will "harvest" my own stem cells. This is accomplished by
taking my blood, running it through a machine and extracting the stem
cells, and then returning the same blood to me. It is done at the Ann
Arbor hospital over about a 3 day period. They will then put me in the
Ann Arbor hospital for about 3 weeks. During that time they will give
massive doses of Chemotherapy and basically destroy my entire immune
system. They then put my harvested and "cleaned" stem cells
back into my blood. The stem cells find their own way to the bone marrow.
Hopefully they will reproduce...Mantle Cell free.
If this doesn't work, they still have the option of doing a "related
donor" bone marrow transplant. That is done the same way as the
previous one, but hopefully with a matching relative's stem cells.
Dr. Levine said that about 5% of the patients die as a result of the
treatment regiment, but that should not be a particular concern since
I am younger and otherwise healthy. He said that the current studies
have followed a group of treated patients for as long as 7 years now.
At five years out 70% were still alive, and of that group, all of them
were free of Mantle Cell. The few who are 7 years out are also still
Mantle Cell free. While it is too soon to call this procedure a "cure"
it is very encouraging, and certainly better than the 6 month to 2 or
3 year life expectancy prior to the new "Nordic" chemotherapy
treatment and bone marrow transplant. Dr. Levine said that a good diet,
continued exercise and a positive mental attitude are still the most
essential elements of a good outcome.
Dr. Levine said that there are not currently any open clinical trials
for my type of cancer, and at this stage of involvement. They will keep
my name on the list, and if a trial becomes available I would be considered
at that time.
That is about all that we know now. Loraine and I thank all of you for
all of your comments, input, concern and prayers. At least now we will
be starting to do "something" and just not sitting around
waiting and wondering.
Thanks for taking the time and interest to read all of this,
Steve (and Loraine)
07/22/09 - As promised, this is a
quick update regarding the doctor/testing timetables. Right now I am
still feeling fine and have no symptoms at all. Hard to believe that
anything is wrong.
On July 31st I am scheduled in Grand Rapids for the PET Scan. It is
at 8:30 AM, and is supposed to last for about 4 hours. It took time
for our insurance to pre-approve the test, and after that to schedule
it. I am also going to try and get an appointment in that afternoon
with the gal in Dr. Brinker's office who's job it is to evaluate our
financial and insurance information. It will be interesting to find
out what might and might not be covered.
On August 4th we are to be in Ann Arbor for the 2nd opinion regarding
treatment options, and discussion regarding a possible bone marrow transplant.
(The transplant would probably be done in Ann Arbor after the initial
chemotherapy?) That appointment is scheduled for 2:30 PM and is supposed
to last about 3 hours. Dr. Brinker indicated that since there are not
any organs in immediate jeopardy, that we have time to slow things down
and get this 2nd opinion. In Ann Arbor they have the latest knowhow,
and they would also know of any clinical trials (if any) which might
be available.
On August 11th we are meeting again with Dr. Brinker (Hematologist)
in Greenville for the discussion regarding the treatment regiment that
he might be recommending. He will go over all of the test results, and
also discuss the 2nd opinion report.
While it seems like a lot of waiting, I think that the time tables are
good. It will give the folks in Ann Arbor time to get the PET scan results,
and also time for Dr. Brinker to get all of the test results and reports.
Again, we will keep everyone informed as things develop. Thanks for
all of the notes, calls, support and prayers.
Steve
07/15/09 - Hi to all,
This is a bummer of an email to write, but Loraine and I thought that
we should let friends and family know some bad news about my health.
Maybe folks will have feedback and suggestions. About three weeks ago
I went in for a routine physical, and the blood tests came back with
abnormalities. After three more blood tests, a bone marrow biopsy and
a CT scan, we now have a confirmed diagnosis of Mantle Cell Lymphoma.
This is one of the rarer types of non-Hodgkin's lymphomas (cancer).
It typically is very aggressive, and "cures" are rare or impossible.
The Mantle cells are in about 40% of my bone marrow, I have an enlarged
spleen and lymph nodes in the stomach area are slightly enlarged. We
were told that this is actually pretty good. Apparently it is in the
early stages.
The next step will be a PET Scan in Grand Rapids within the next couple
of days. After that, our Hematologist (Dr. Brett Brinker, Grand Rapids)
will get an appointment for me at either Ann Arbor or Detroit for a
second opinion regarding treatment options. There is also a possibility
of getting into a clinical trial, which could be a good thing. While
there are several treatment options, the anticipated treatment probably
will consist of out patient chemotherapy for 4-6 months, followed by
either maintenance chemo and/or a stem cell transplant (from my own
"cleaned" stem cells.) We have an appointment three weeks
from now with Dr. Brinker to review the PET Scan results and the second
opinion. Treatment will probably begin shortly after that. We were told
that this type of Lymphoma responds very well to chemotherapy, but that
it tends to become resistant to therapy early on. That is why we need
to hope for a clinical trial and/or stem cell transplant.
We were told not to look at the statistics on the Internet. There, the
best survival rates are listed at 2 to 5 years. Our Doctor said that
this is old data, and a lot has changed in the last couple of years.
Also, since I am relatively young and in otherwise good health, doctors
can be more aggressive with treatment options. A long remission (>5
years), or maybe even a "cure" is remotely possible.
This has been a rough few weeks for us, but at least now we can get
out of the "waiting" stage and we are now approaching the
treatment phase. (I realize that this won't be a nice time, but at least
it will be proactive and not just waiting.) If anyone wants more info
on Mantel cell lymphoma, this is one of the best web sites that I have
found...
http://en.wikipedia.org/wiki/Mantle_cell_lymphoma
Appreciate your thoughts and prayers,
Steve (and Loraine) schubb@homeworkswildblue.com