Well, some (or most) of you didn't get the memo - cause I didn't leave one - but Terry didn't go for his chemo treatment on Thursday because they didn't get the drug in time. We had to go Friday. Sorry for the wait!
We got started with a small, first dose of Ofatumumab. (What a word huh?) They began the IV at about 8:30am, Friday morning, with some Ibuprofen (well the Ibuprofen was oral), Benedryl, and Solumedrol (or Solu Medrol) to help with any possible reactions. After a several minutes they start the Ofatumumab at a slow infusion rate and speed it up as they learn if his body tolerates it well. It was started at 50, then to 100, then up to 200 - the max for the day. He was doing very well, feeling fine, until he started feeling itchy. Oh, the hives were coming on - about 11:30 maybe. They stopped the Ofatumamab and gave him more Benedryl, waited a half hour and start it again, gradually getting up to 200 again.
And again, things went well until about 2:30 when the itchy hives returned. Again the "Ofa" was stopped, more Benedryl and this time more Solumedrol was given, and we waited a half hour and started again. This time it was gradually increased to the rate of 175 instead of 200, and he did great. He was done at about 5:10pm.
Maybe you've thought of this already, but three doses of Benedryl kept him pretty sleepy all day. I can't call them good naps, but he did get a few naps in.
Now, they split the dose into 3 bags because they don't know if a patient will be able to get the full dosage, especially on their first day. Terry got 2 of the 3 bags planned for him and they still called it a success.
Here's the clincher - the first day is only half of what they give the following days. So, he got 2/3 of what he was supposed to get for Friday, but only 1/3 of what he will get the next time (and each time after that for a total of 8 infusions - one a week). Usually the second dose is easier on the body, (that is "normal" for everyone, and with most every chemo drug). There is still a possibility that the second dose will not get fully administered, but we will just have to wait and see. We will be going in on Thursday, and if he doesn't get it all, we will go back in for the remaining dose on Friday.
About Ofatumumab
It's a newer drug. The Wenatchee Valley Clinic has only administered it to one other patient (who took his second dose in the hospital so he could have time enough to get the full dose in one sitting). One of the nurses has a cousin who got this drug and the reports of his health are favorable. We look forward to something favorable too! That's really all we know though.
So far Terry is feeling fine ..., but you already knew that didn't you!
However, I can see that his face is flushed this morning and he does say that his head is feeling ... I don't know what word he used, but I assumed it was a fullness and strange feeling - hard to concentrate. After so much Benedryl (which he got another large dose of when we got home) I can't think it would be anything else - and with the other meds and chemicals there's no doubt it's not pleasant.
Oh - Terry's blood work!
WBC = 2.2(L) (but that is the exact count for the last three appointments)
RBC = 3.93(L) (which is up ever-so-slightly from the last two appointments)
Platelets = 41(L) (I guess we'll take it - that's right around the counts he's had)
Neutrophils = .9(L) (It has gone down .1 each week)
Calcium is good! Protein is good! (Just sayin!)
The liver counts (ALT and AST) are the lowest counts in the last three weeks too, so we are pleased with that.
Saturday, February 25, 2012
Tuesday, February 21, 2012
Stuffy's
President's Day weekend - filled it as full as we could.
A highlight - after meetings Sunday we drove to Longview for a visit with my parents (and other family members that came to visit too - it was fun to see you - we look forward to next time). It was a short visit, but it was still a good one.
We mentioned to a friend (Russ) that we were going to Longview and he asked if we'd seen the largest cinnamon roll that comes from there. We decided that we'd better check it out, because we hadn't even heard about it before.
We asked my parents about it, and decided to go there for breakfast on President's Day. The name of the place is Stuffy's - well, Stuffy's II. (click on the link to see more.)
It's a cute place filled with all sorts of memorabilia. There are pictures and posters and signs and license plates, and more and more stuff all around the walls. It's stuff about Elvis, Marilyn Monroe, James Dean, and other famous people. The tables each have a salt and pepper shaker, soda bottle filled with colored sugar, packets of sugar, and maybe other stuff sitting on top of a record ... yes, a real music record (an LP?).
The waitresses wear poodle style skirts and saddle shoes/oxfords to match. It was really cute.
They have Breakfast Stuff, Lunch Stuff, and Dinner Stuff.
The Breakfast Stuff I had was called Tiny Stuff. It's hashbrowns with onions, peppers, and chunks of ham, tomato, covered in white sauce gravy and sprinkled with cheddar cheese.
They also had Little Stuff and Large Stuff. Tiny Stuff - not so tiny - can be split between two people for sure. You are certainly stuffed when you are done - and I don't mean done eating it all - just done eating what you can. There are many other things on their menu too.
As for the cinnamon roll? We bought one and shared it - happy to have done so! But we were so stuffed, we got it to go.
It's big ... it's good ... it's fun ... and yet, it's not as good as my mom makes. (I know, I'm spoiled! I not only grew up in a home with a wonderful mother, I grew up in a home with a wonderful cook.)
We visited some more and had to head home. Short and Sweet was our visit! We love Family Time!
A highlight - after meetings Sunday we drove to Longview for a visit with my parents (and other family members that came to visit too - it was fun to see you - we look forward to next time). It was a short visit, but it was still a good one.
We mentioned to a friend (Russ) that we were going to Longview and he asked if we'd seen the largest cinnamon roll that comes from there. We decided that we'd better check it out, because we hadn't even heard about it before.
We asked my parents about it, and decided to go there for breakfast on President's Day. The name of the place is Stuffy's - well, Stuffy's II. (click on the link to see more.)
It's a cute place filled with all sorts of memorabilia. There are pictures and posters and signs and license plates, and more and more stuff all around the walls. It's stuff about Elvis, Marilyn Monroe, James Dean, and other famous people. The tables each have a salt and pepper shaker, soda bottle filled with colored sugar, packets of sugar, and maybe other stuff sitting on top of a record ... yes, a real music record (an LP?).
The waitresses wear poodle style skirts and saddle shoes/oxfords to match. It was really cute.
They have Breakfast Stuff, Lunch Stuff, and Dinner Stuff.
The Breakfast Stuff I had was called Tiny Stuff. It's hashbrowns with onions, peppers, and chunks of ham, tomato, covered in white sauce gravy and sprinkled with cheddar cheese.
They also had Little Stuff and Large Stuff. Tiny Stuff - not so tiny - can be split between two people for sure. You are certainly stuffed when you are done - and I don't mean done eating it all - just done eating what you can. There are many other things on their menu too.
As for the cinnamon roll? We bought one and shared it - happy to have done so! But we were so stuffed, we got it to go.
It's big ... it's good ... it's fun ... and yet, it's not as good as my mom makes. (I know, I'm spoiled! I not only grew up in a home with a wonderful mother, I grew up in a home with a wonderful cook.)
We visited some more and had to head home. Short and Sweet was our visit! We love Family Time!
Saturday, February 18, 2012
A Beautifully Cracked Bowl
A cracked bowl is not usually so beautiful to me. Just look at it! It's really not a desirable look.
Even with the crack, I chose this bowl from among a few things that belonged to Terry's mother, but didn't really know how I would use or display it.
We also sorted through some yarn, thread, and other sewing notions that belonged to her. A lot of these items were randomly put into boxes, however because I do not use yarn much I didn't want to take big bundles of it, but I did choose some tiny balls of yarn with the intent to put them inside one of Idris' jars and set it up above my cupboards.
As I was trying to find a place for these things in our home I decided to put these sewing items in the cracked bowl instead of a jar. It makes the bowl much more beautiful, especially since there is a sentimental attraction. It now sits in my curio cabinet and I love it.
This collection will help remind me of the beautiful woman that once owned them ... the wonderful mother and grandmother that blessed our lives in many ways. I am grateful for her and the love she showed me and my family, and especially for the way she raised her son.
Hey, I found the thimble and added it to this sweet collection. (I moved the bells to another spot, and they fell down to the bottom of the bowl. oops!)
Even with the crack, I chose this bowl from among a few things that belonged to Terry's mother, but didn't really know how I would use or display it.
We also sorted through some yarn, thread, and other sewing notions that belonged to her. A lot of these items were randomly put into boxes, however because I do not use yarn much I didn't want to take big bundles of it, but I did choose some tiny balls of yarn with the intent to put them inside one of Idris' jars and set it up above my cupboards.
As I was trying to find a place for these things in our home I decided to put these sewing items in the cracked bowl instead of a jar. It makes the bowl much more beautiful, especially since there is a sentimental attraction. It now sits in my curio cabinet and I love it.
This collection will help remind me of the beautiful woman that once owned them ... the wonderful mother and grandmother that blessed our lives in many ways. I am grateful for her and the love she showed me and my family, and especially for the way she raised her son.
Hey, I found the thimble and added it to this sweet collection. (I moved the bells to another spot, and they fell down to the bottom of the bowl. oops!)
Friday, February 17, 2012
Valentine Decor
Here is my favorite spot at the Ward Valentine Dinner Dance. It was such a nice evening!
More photos from the evening can be found at mystuffroom.blogspot.com
More photos from the evening can be found at mystuffroom.blogspot.com
Thursday, February 16, 2012
Side Affects
I decided to learn more about Ofatumumab. (See Previous Post)
I haven't heard it pronounced, but it sure is spelled funny - o'' fa toom' ue mab.
The following info is from MedlinePlus
What side effects can this medication cause?
Ofatumumab injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
•muscle spasms
•stuffy or runny nose
•sneezing
Some side effects can be serious. If you experience any of these symptoms or those listed in the SPECIAL PRECAUTIONS section , call your doctor immediately:
•difficulty breathing
•swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs
•hoarseness
•sudden reddening of the face, neck, or upper chest
•weakness
•extreme tiredness
•yellowing of the skin or eyes
•unusual bleeding or bruising
•pale skin
•pinpoint, flat, round, red spots under the skin
•rash
•hives
•fever, chills, cough, sore throat, or other signs of infection
•pain in chest, arms, back, neck, jaw, or stomach
•nausea
•fainting
Ofatumumab injection may cause other side effects. Call your doctor if you have any unusual problems while receiving this medication.
I haven't heard it pronounced, but it sure is spelled funny - o'' fa toom' ue mab.
The following info is from MedlinePlus
What side effects can this medication cause?
Ofatumumab injection may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
•muscle spasms
•stuffy or runny nose
•sneezing
Some side effects can be serious. If you experience any of these symptoms or those listed in the SPECIAL PRECAUTIONS section , call your doctor immediately:
•difficulty breathing
•swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs
•hoarseness
•sudden reddening of the face, neck, or upper chest
•weakness
•extreme tiredness
•yellowing of the skin or eyes
•unusual bleeding or bruising
•pale skin
•pinpoint, flat, round, red spots under the skin
•rash
•hives
•fever, chills, cough, sore throat, or other signs of infection
•pain in chest, arms, back, neck, jaw, or stomach
•nausea
•fainting
Ofatumumab injection may cause other side effects. Call your doctor if you have any unusual problems while receiving this medication.
Changed Their Minds Again!
Several titles could be used here - "My Bad!" is one of them. The kids were talking about "party foul" the other day when a cupcake tipped over, and we think this could be a "medical foul".
We do know that just because we are told one thing, it doesn't mean that is what is really going to happen. We seem to experience this a lot! Therefore, you do too! Sorry!
Terry got a call yesterday and learned that we are not going to SCCA again this year for a transplant as originally expected. During their meeting Wednesday they decided to be cautious and take a different route.
As Terry was talking to the doctor I could hear the excitement in her voice through the phone, but couldn't hear what she was saying. I could hear Terry - and he was saying how he liked this plan better, and I thought I could sense a bit of relief and tell that he was pleased.
Terry will begin a new chemo treatment next week (Thursday - from 8am to 6pm if things go well) and have one once a week for 7 or 8 weeks. The doctor wants to do these in Wenatchee, and we readily agree. We don't know much about this drug (Ofatumumab) and it's side affects, but at this point we are feeling good about this route.
We had such a hard time thinking that we were going back for a second transplant...even wondering if we would do it right now. My concern was that this was our last opportunity, which even seemed like our last hope, and I wasn't excited about giving up on that last hope. I wasn't convinced it was even going to work at this point and yet knew that I would do whatever "felt" right.
So, I am relieved to know that we can live at home, but I am sorry for Terry, knowing that it will surely involve some discomfort and unpleasant, possibly even miserable days.
I just need to say (again) that I am ever grateful for the peace that comes from above. I love my Heavenly Father and our Savior Jesus Christ. They are where I turn for peace. Sometimes I wonder if Heavenly Father ever gets frustrated with me and wonders why I can't handle things better, but then I remember that He knows me and He is aware of my short comings and He wants to help me through them...and He does help me through them.
We do know that just because we are told one thing, it doesn't mean that is what is really going to happen. We seem to experience this a lot! Therefore, you do too! Sorry!
Terry got a call yesterday and learned that we are not going to SCCA again this year for a transplant as originally expected. During their meeting Wednesday they decided to be cautious and take a different route.
As Terry was talking to the doctor I could hear the excitement in her voice through the phone, but couldn't hear what she was saying. I could hear Terry - and he was saying how he liked this plan better, and I thought I could sense a bit of relief and tell that he was pleased.
Terry will begin a new chemo treatment next week (Thursday - from 8am to 6pm if things go well) and have one once a week for 7 or 8 weeks. The doctor wants to do these in Wenatchee, and we readily agree. We don't know much about this drug (Ofatumumab) and it's side affects, but at this point we are feeling good about this route.
We had such a hard time thinking that we were going back for a second transplant...even wondering if we would do it right now. My concern was that this was our last opportunity, which even seemed like our last hope, and I wasn't excited about giving up on that last hope. I wasn't convinced it was even going to work at this point and yet knew that I would do whatever "felt" right.
So, I am relieved to know that we can live at home, but I am sorry for Terry, knowing that it will surely involve some discomfort and unpleasant, possibly even miserable days.
I just need to say (again) that I am ever grateful for the peace that comes from above. I love my Heavenly Father and our Savior Jesus Christ. They are where I turn for peace. Sometimes I wonder if Heavenly Father ever gets frustrated with me and wonders why I can't handle things better, but then I remember that He knows me and He is aware of my short comings and He wants to help me through them...and He does help me through them.
Tuesday, February 14, 2012
Happy Valentines Day!
(Image is of a card we received a few years ago from a secret friend - isn't it beautiful!)
Sunday, February 12, 2012
A Grateful Heart Post
We are more in love now than we were 32 years ago. I am so grateful for my wonderful husband and the many years of joy we've shared. I look forward to many more.
(Barn Image from The Country Chic Cottage)
Happy Anniversary!
"A man courts a woman for a short while to win her for time, but he must court her for a lifetime to win her for eternity."
- S Michael Wilcox
(Daughters of God, p52)
"Happy marriages begin when we marry the ones we love, and they blossom when we love the ones we marry."
- Tom Mullen
(Barn Image from The Country Chic Cottage)
Happy Anniversary!
"A man courts a woman for a short while to win her for time, but he must court her for a lifetime to win her for eternity."
- S Michael Wilcox
(Daughters of God, p52)
"Happy marriages begin when we marry the ones we love, and they blossom when we love the ones we marry."
- Tom Mullen
Wednesday, February 8, 2012
The Doctors are In
This is the Wednesday when the doctors at SCCA are discussing Terry's case. They are probably doing so as I write this.
However, we do already know something.
Terry got a call from SCCA yesterday informing him that the counts are not what they would like to see. The disease numbers are slightly up and the donor counts are slightly lower - neither is a good thing, even if it is slight.
They asked that he get a CT scan, so that will happen Thursday.
What does this mean?
Well, we don't know that!
We aren't sure if we will hear from them after their meeting today or if we will have to wait for a second meeting (next week) so they can talk about the results of this scan.
Oh Bother!
You'll just have to keep waiting with us! We'll let you know when we learn something! We are trying to keep you posted and up to date!
However, we do already know something.
Terry got a call from SCCA yesterday informing him that the counts are not what they would like to see. The disease numbers are slightly up and the donor counts are slightly lower - neither is a good thing, even if it is slight.
They asked that he get a CT scan, so that will happen Thursday.
What does this mean?
Well, we don't know that!
We aren't sure if we will hear from them after their meeting today or if we will have to wait for a second meeting (next week) so they can talk about the results of this scan.
Oh Bother!
You'll just have to keep waiting with us! We'll let you know when we learn something! We are trying to keep you posted and up to date!
Tuesday, February 7, 2012
Baby on the way?!?!
We thought it would be fun to share Brandon and Megan's adoption profile. Take a look if you'd like. Share the link if you like.
Having this profile posted means there is a baby on the way - right? That's the way I see it. We are pleased to announce that this makes grand baby #3 on the way for us this year.
ItsAboutLove.org - Brandon and Megan
We are so excited!
I am so grateful for our children and grandchildren!
(9+5=14 children) (5+3=8 grandchildren)
One more thing - it seems fitting for this post:
Last night for Family Home Evening we watched Kung Fu Panda 2. I wasn't sure what to think about it at first, but by the end of the movie I was sure it was a favorite message ... my heart loved it!
I won't share more about the movie - I don't want to spoil it for those who still want to see it, and those who have seen it will understand why it touches my heart.
Having this profile posted means there is a baby on the way - right? That's the way I see it. We are pleased to announce that this makes grand baby #3 on the way for us this year.
ItsAboutLove.org - Brandon and Megan
We are so excited!
I am so grateful for our children and grandchildren!
(9+5=14 children) (5+3=8 grandchildren)
One more thing - it seems fitting for this post:
Last night for Family Home Evening we watched Kung Fu Panda 2. I wasn't sure what to think about it at first, but by the end of the movie I was sure it was a favorite message ... my heart loved it!
I won't share more about the movie - I don't want to spoil it for those who still want to see it, and those who have seen it will understand why it touches my heart.
Friday, February 3, 2012
About our visit to SCCA
We started the day at 3:45am (yuk!), but things went well anyway!
The roads were clean and dry, so the traveling was great both ways.
We started at Registration and from there to Labs. We gave them some envelopes that BJo made for the patients with Hickman lines. That was fun - the nurses were so excited, and they immediately started laying them out for the patients. There were smiles and excitement as they did so, and they didn't even know I was watching them.
Next appointment was a Pulmonary Function Test. The results were as good as or better than last time.
The dreaded Bone Marrow Biopsy completed the testing. Luckily it was only one side and only bone marrow, no bone or skin taken.
Lastly was the GVHD Evaluation and doctor visits. We really like the clinic nurse that sees us during these LTFU (Long Term Follow Up) visits. We feel taken care of.
We saw a new Primary Provider, and really liked him too, though he admitted that he really didn't have a lot of answers, because Terry's case is so different than he has seen. (We really hear something like that every time we go - Terry is really throwing them a curve they have not dealt with before - we don't have answers either - it's just the way it is. We hope that something good will come from it all.)
Our Attending MD was a doctor we had seen during Transplant, so she was familiar with our case, but still had no answers - you know, it's different than they have seen...still.
WBC = 3.41 (norm is 4.3-10.0)
RBC = 4.07 (norm is 4.40-5.6)
Platelet Count = 58 (norm is 150-400)
Neutrophils = 1.81 (woohoo, normal is 1.80-7.00)
ALT = 91 (norm is 10-48)
AST = 99 (norm is 15-40)
Cholesterol = 138
There were two reasons for this visit -
1 - To evaluate the GVHD (Graft Verses Host Disease) after his DLI (Donor Lymphocyte Infusion).
2 - To evaluate how Terry responded to the DLI - did it improve the chimerism/donor graft?.
The evaluations were somewhat completed -
1. Terry doesn't seem to have much or any sign of GVHD.
2. They are waiting for results from the bone marrow, to check the chimerisms (remember that ch is a k sound and the first i is a long i).
They talk about Terry a lot over there, and it will happen again on Wednesday when the doctors have their meeting. They will discuss Terry's disease at this stage and consider all options. They will report to us sometime Friday. We know that is what they told us, but we also know that it could be delayed for some unforeseen reason. However, we do expect to hear something Friday, even if it is to learn that they are still talking it over and studying up and ....
They are looking at his disease status (CLL/SLL) and the chimerism status.
What are the options?
1 - A second DLI
2 - A second stem cell transplant
a - with a different donor
b - with the same donor
3 - Do nothing for a while and see what happens
At this point we tend to like option 3, but that might change after we hear the lab results.
This is kind of our last chance - at least they only do two stem cell transplants, and if that doesn't work then what????? Of course we haven't made any real decision and we will surely take it to the Lord to see what He would have us do.
We are taking it one day at a time - just like yesterday and the day before and the day before, and ....
Now, it's time for a break after reading all of this. Do you have a nice cold glass of water available? I'd even go for some chocolate! How 'bout you?
Thanks for sharing your time with us. We're happy you're checking in! Have a great day!
The roads were clean and dry, so the traveling was great both ways.
We started at Registration and from there to Labs. We gave them some envelopes that BJo made for the patients with Hickman lines. That was fun - the nurses were so excited, and they immediately started laying them out for the patients. There were smiles and excitement as they did so, and they didn't even know I was watching them.
Next appointment was a Pulmonary Function Test. The results were as good as or better than last time.
The dreaded Bone Marrow Biopsy completed the testing. Luckily it was only one side and only bone marrow, no bone or skin taken.
Lastly was the GVHD Evaluation and doctor visits. We really like the clinic nurse that sees us during these LTFU (Long Term Follow Up) visits. We feel taken care of.
We saw a new Primary Provider, and really liked him too, though he admitted that he really didn't have a lot of answers, because Terry's case is so different than he has seen. (We really hear something like that every time we go - Terry is really throwing them a curve they have not dealt with before - we don't have answers either - it's just the way it is. We hope that something good will come from it all.)
Our Attending MD was a doctor we had seen during Transplant, so she was familiar with our case, but still had no answers - you know, it's different than they have seen...still.
WBC = 3.41 (norm is 4.3-10.0)
RBC = 4.07 (norm is 4.40-5.6)
Platelet Count = 58 (norm is 150-400)
Neutrophils = 1.81 (woohoo, normal is 1.80-7.00)
ALT = 91 (norm is 10-48)
AST = 99 (norm is 15-40)
Cholesterol = 138
There were two reasons for this visit -
1 - To evaluate the GVHD (Graft Verses Host Disease) after his DLI (Donor Lymphocyte Infusion).
2 - To evaluate how Terry responded to the DLI - did it improve the chimerism/donor graft?.
The evaluations were somewhat completed -
1. Terry doesn't seem to have much or any sign of GVHD.
2. They are waiting for results from the bone marrow, to check the chimerisms (remember that ch is a k sound and the first i is a long i).
They talk about Terry a lot over there, and it will happen again on Wednesday when the doctors have their meeting. They will discuss Terry's disease at this stage and consider all options. They will report to us sometime Friday. We know that is what they told us, but we also know that it could be delayed for some unforeseen reason. However, we do expect to hear something Friday, even if it is to learn that they are still talking it over and studying up and ....
They are looking at his disease status (CLL/SLL) and the chimerism status.
What are the options?
1 - A second DLI
2 - A second stem cell transplant
a - with a different donor
b - with the same donor
3 - Do nothing for a while and see what happens
At this point we tend to like option 3, but that might change after we hear the lab results.
This is kind of our last chance - at least they only do two stem cell transplants, and if that doesn't work then what????? Of course we haven't made any real decision and we will surely take it to the Lord to see what He would have us do.
We are taking it one day at a time - just like yesterday and the day before and the day before, and ....
Now, it's time for a break after reading all of this. Do you have a nice cold glass of water available? I'd even go for some chocolate! How 'bout you?
Thanks for sharing your time with us. We're happy you're checking in! Have a great day!
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