Hi there,
Just a quick update of what's going on over on Signal Mountain. Mom promises she will send out a more personal update soon, so I'll stick to the facts.
The 'chemo light' (aka dacogen) that mom has been on since leaving Vanderbilt last summer has done her pretty well. Her leukemic blasts went down fairly dramatically, though doctors do not expect this regimen to put her into remission.
For that, she first tried a drug called Ipilimumab, which is a drug that has been wildly successful for some people and some types of cancers. Unfortunately, after two rounds of this drug at a hospital in Atlanta, she was told that it wasn't working for her.
Her doctors at Vanderbilt had been looking for other options and found one at Sarah Cannon in Nashville. This drug is an inhibitor drug that inhibits the body's production of a protein that cancer cells need to thrive. This protein is one that normal cells do not need. It is therefore less toxic than any type of chemotherapy, but has been shown to halt the proliferation of cancer cells. In some cases, it has killed cancer cells by starving them. We are hopeful that this will work for her.
She just began this regimen this week. It will mean a weekly trip to Nashville for a couple months, then more infrequent trips up there.
A number of you have been asking about meal delivery. We have re-activated the meal train account to coordinate this should you be interested. Please see instructions below. She could also use companions for the trips to Nashville if anyone is interested in helping out that way!
Thanks again for your support and prayers.
Callie
To sign up for a meal, follow this link http://www.mealtrain.com?id=mmu8tlctd31t and create an account for MealTrain. (I believe there is also an option to sign in with your Facebook account) Once you create the account or sign in, you will see a list of dates that you can choose from. Click "Book this Date" if there is a day that works for you.
Friday, March 27, 2015
Wednesday, January 7, 2015
Happy New Year
I hope all of you had a wonderful holiday season. Ours was wonderful. Kit, Demian, Callie, Mike and Davis (plus the added bonus of Mike's terrific dad) were all here for the festivities. We hated that Case, Sophie and Patrick couldn't be here--they spent the holiday with friends in Bulgaria. Can't feel too sorry for them.
Since we last posted we've had excitement around here. Kit and Demian got married in a small ceremony here on Signal Mountain. It was lovely--the bride and groom make a lovely couple! That event was closely followed by another 5 days of dacogen.
In November I went to see two doctors; the first one was in Atlanta. I had heard about a research trial from the doctor at Dana Faber in Boston. He was working on the research with a doctor in Atlanta, and he had suggested I might consider it. The drug is called ipilumumub (ipi). It has been used with solid tumors but is in the trial stage for blood cancers. The trial is small and just open to folks who have a relapsed stem cell transplant. The hope is that the drug will urge the donor cells to be more active in fighting my leukemia cells. Then I went to Vanderbilt to see what they thought. They were encouraging, and I came away thinking that maybe I would have a Donor Lymphocyte Infusion. This is when they get white cells from the original donor to fight the bad guys. There were two "ifs" to this plan. I had to have at least 20% donor cells and less than 10% blasts (immature cells released by the bone marrow). The blasts were okay. The donor cells were not. I had 86% donor T-cells but only 1% (I did not forget a zero) donor B-cells. No DLI.
I thought those numbers would keep from getting into the ipi trial, but alas, no! Monday I went to Atlanta to finalize plans to proceed with the trial. I will have to go to Northside once a week, and I will get ipi infusions every 3 weeks for 4 sessions. If it is successful, it will put me in remission and avoid having to make a decision about doing 7-3 induction infusion. I will keep my hair and fingernails! So send prayers and good wishes that ipi does the trick. Where we go after remission is still under debate. A success story will buy me some good times, hopefully. Love to all. I'm out of room.
Since we last posted we've had excitement around here. Kit and Demian got married in a small ceremony here on Signal Mountain. It was lovely--the bride and groom make a lovely couple! That event was closely followed by another 5 days of dacogen.
In November I went to see two doctors; the first one was in Atlanta. I had heard about a research trial from the doctor at Dana Faber in Boston. He was working on the research with a doctor in Atlanta, and he had suggested I might consider it. The drug is called ipilumumub (ipi). It has been used with solid tumors but is in the trial stage for blood cancers. The trial is small and just open to folks who have a relapsed stem cell transplant. The hope is that the drug will urge the donor cells to be more active in fighting my leukemia cells. Then I went to Vanderbilt to see what they thought. They were encouraging, and I came away thinking that maybe I would have a Donor Lymphocyte Infusion. This is when they get white cells from the original donor to fight the bad guys. There were two "ifs" to this plan. I had to have at least 20% donor cells and less than 10% blasts (immature cells released by the bone marrow). The blasts were okay. The donor cells were not. I had 86% donor T-cells but only 1% (I did not forget a zero) donor B-cells. No DLI.
I thought those numbers would keep from getting into the ipi trial, but alas, no! Monday I went to Atlanta to finalize plans to proceed with the trial. I will have to go to Northside once a week, and I will get ipi infusions every 3 weeks for 4 sessions. If it is successful, it will put me in remission and avoid having to make a decision about doing 7-3 induction infusion. I will keep my hair and fingernails! So send prayers and good wishes that ipi does the trick. Where we go after remission is still under debate. A success story will buy me some good times, hopefully. Love to all. I'm out of room.
Sunday, October 12, 2014
Donating Blood
Since this crazy saga began back in April, Wanda (mom) has received countless numbers of blood transfusions both in Nashville as well as in Chattanooga. Well, to be clear, I'm sure it's not that many - it can be counted - but, still - it's a good number. She goes once or twice a week to have a complete blood count (CBC) done and, depending on what her numbers are, the doctors decide to give her either packed red blood cells, platelets, or both. The packed red blood cells boost her hemoglobin, allowing her blood to carry more oxygen throughout her body. The platelets allow her blood to clot when necessary. On the days when she receives a transfusion, she just gets to sit in a chair and pass the time either in a private room or with 3 of her not-so-closest (random) friends.
My cousin Mandi recognized mom's thirst for blood and had a great idea to surprise mom by getting people to donate blood for her 65th birthday. If you are signed up to receive email updates from the blog, you should have received an email about it. Anyway, I'm happy to say that a good number of you donated (blood or cash) and sent pictures and we made a collage of all the pics we could find (sorry if any were left off!). One of mom's friends even made it into the local newscast while donating.
Personally, I hadn't donated blood since college, so I approached the donation with trepidation. However, it turned out to be relatively painless and very quick (less than 25 minutes) and I was left wondering why I hadn't been more giving of my blood in the past. It's satisfying to know that a simple donation of blood can go and keep someone like my mom healthy. So - go, donate!
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| Wanda's Warriors |
Saturday, October 4, 2014
All roads lead to . . .
What exciting weeks we have had! A visit from Callie and Davis, my fun birthday, and then Case, Sophie, and Patrick invaded our lives two weeks ago! They arrived on September 19 (a chemo week), and I got to go to the hospital from the 23rd-26th. I had a neutropenic fever, a common event with low white cell counts. The silver lining (always on the lookout for one) about that was the doctors gave me lots of antibiotics so that I was able to make the trip to Boston from the 27th-Oct. 1 with no problems. If you wear a mask and act slightly informed, Delta can be really nice to you . . . just saying!
The reason for the trip to Boston was an appointment with Dr. Soiffer at Dana Faber Cancer Center. I was dreading it, expecting more grim news. He could sense that we already knew the grim news, so Dr. Stiffer focused on hopeful news. The bottom line, however, is not what I wanted to hear--that any path to "healing" involves another stem cell transplant or a leukocyte infusion. Either would involve revisiting my original donor. He gave me some reasons why the transplant had relapsed and his ideas to remedy the possibility if I chose a second procedure.
He had several trials that he thought might be helpful in getting me into remission, which is necessary for either procedure. He was helpful and suggested plans of action, but there are many "ifs" to be dealt with, like
--Will another month or two of Dacogen put me into remission????
--When do I give up on Dacogen and perhaps join a trial group?
--If no lesser remedy works, am I willing to do the 7-3 chemo to get me into remission?
--If I have another stem cell transplant, would I go back to Vandy? Boston? Atlanta?
Meanwhile, I'm feeling pretty good and looking forward to all the family being here for Kit's wedding October 18. On October 20, the reprieve is over and it's time for another round of dacogen.
Thanks for all the positive thoughts you send our way. We feel them, and we know you're there with us hoping for maybe just a tiny miracle.
The reason for the trip to Boston was an appointment with Dr. Soiffer at Dana Faber Cancer Center. I was dreading it, expecting more grim news. He could sense that we already knew the grim news, so Dr. Stiffer focused on hopeful news. The bottom line, however, is not what I wanted to hear--that any path to "healing" involves another stem cell transplant or a leukocyte infusion. Either would involve revisiting my original donor. He gave me some reasons why the transplant had relapsed and his ideas to remedy the possibility if I chose a second procedure.
He had several trials that he thought might be helpful in getting me into remission, which is necessary for either procedure. He was helpful and suggested plans of action, but there are many "ifs" to be dealt with, like
--Will another month or two of Dacogen put me into remission????
--When do I give up on Dacogen and perhaps join a trial group?
--If no lesser remedy works, am I willing to do the 7-3 chemo to get me into remission?
--If I have another stem cell transplant, would I go back to Vandy? Boston? Atlanta?
Meanwhile, I'm feeling pretty good and looking forward to all the family being here for Kit's wedding October 18. On October 20, the reprieve is over and it's time for another round of dacogen.
Thanks for all the positive thoughts you send our way. We feel them, and we know you're there with us hoping for maybe just a tiny miracle.
Saturday, September 13, 2014
Made it to Medicare
Yes, on September 8 I celebrated my 65th birthday. I made it to Medicare!
What a day it was! First I had a doctor's appointment where I got the results of the bone marrow biopsy. Blasts were down, which is slightly promising. They definitely don't call it remission, but it's better than blasts going up or staying the same. Then Dr. Daniel postponed the next round of chemo until this week. Was that his birthday present to me?
"Thank you's" go to many Wanda's Warriors. I got sooo many cards and sooo many emails that day. Turning 65 wasn't too bad. I send a special thank you to those of you who donated blood or sent donations to Blood Assurance. I have had fun with all the pictures you sent. What a surprise! My niece Mandi is just full of fun ideas! I love you all!
I will say the chemo is cumulative as far as making me tired. I haven't been sick though, so I shall not complain, I shall not complain, I shall not . . .
Callie and Davis were here last week. I forgot to get her to do a post. Maybe I can coerce Case into writing a blog during the month that he, Sophie, and Patrick will be here on home leave. Maybe after the trip to Dana Faber in late September there will be something encouraging to report.
What a day it was! First I had a doctor's appointment where I got the results of the bone marrow biopsy. Blasts were down, which is slightly promising. They definitely don't call it remission, but it's better than blasts going up or staying the same. Then Dr. Daniel postponed the next round of chemo until this week. Was that his birthday present to me?
"Thank you's" go to many Wanda's Warriors. I got sooo many cards and sooo many emails that day. Turning 65 wasn't too bad. I send a special thank you to those of you who donated blood or sent donations to Blood Assurance. I have had fun with all the pictures you sent. What a surprise! My niece Mandi is just full of fun ideas! I love you all!
I will say the chemo is cumulative as far as making me tired. I haven't been sick though, so I shall not complain, I shall not complain, I shall not . . .
Callie and Davis were here last week. I forgot to get her to do a post. Maybe I can coerce Case into writing a blog during the month that he, Sophie, and Patrick will be here on home leave. Maybe after the trip to Dana Faber in late September there will be something encouraging to report.
Monday, August 18, 2014
Thanksgiving in August
Another blog from the one who needs a ghost writer?????
Yes indeed!!!!!
It's all because of the dreams. I dream about thank you notes and compose them in my subconscious. I remember the adjectives I used to describe a delicious "lite" pie or a scrumptious roast. I remember the gratitude I expressed to a friend who spent the day with me in the infusion room while I get a transfusion (although if you like to chat, those stark rooms and lots of waiting certainly provides time to catch up on a great variety of topics). The problem with these "mental" notes is that for many of them, I cannot remember looking up addresses. That's where the dream theory comes in. Did I really write the note or was it a dream? Is this a result of chemo brain, or is it just my random personality asserting itself? No matter! I just want all the Warriors to know that whether you received a tangible note or if you where lucky enough to get a "dreamy" one (They were sooo nice!), my family and I appreciate you. We are going to back off meals so we can use up some things in the freezer, although meal train will be reactivated should the status quo change. I will still be calling folks to drive me to appts. Let me know if you'd like to help in that way. I love folks stopping by to visit, and if you don't donate blood, you might consider it. I am so grateful for all the support I have received from so many people. It has been a dream come true. Knowing so many folks care is truly the "silver lining" in the
clouds that have hovered since April. Wanda's Warriors are the best!
Yes indeed!!!!!
It's all because of the dreams. I dream about thank you notes and compose them in my subconscious. I remember the adjectives I used to describe a delicious "lite" pie or a scrumptious roast. I remember the gratitude I expressed to a friend who spent the day with me in the infusion room while I get a transfusion (although if you like to chat, those stark rooms and lots of waiting certainly provides time to catch up on a great variety of topics). The problem with these "mental" notes is that for many of them, I cannot remember looking up addresses. That's where the dream theory comes in. Did I really write the note or was it a dream? Is this a result of chemo brain, or is it just my random personality asserting itself? No matter! I just want all the Warriors to know that whether you received a tangible note or if you where lucky enough to get a "dreamy" one (They were sooo nice!), my family and I appreciate you. We are going to back off meals so we can use up some things in the freezer, although meal train will be reactivated should the status quo change. I will still be calling folks to drive me to appts. Let me know if you'd like to help in that way. I love folks stopping by to visit, and if you don't donate blood, you might consider it. I am so grateful for all the support I have received from so many people. It has been a dream come true. Knowing so many folks care is truly the "silver lining" in the
clouds that have hovered since April. Wanda's Warriors are the best!
Friday, August 15, 2014
The Beat Goes On
Is it too obvious that I love to be taken care of when I'm less than 100%? It's true. As I spend hours in isolation from malls, grocery stores, church gatherings, parties, and Walmart, one would think I would use that isolation to communicate in a germ-free, email kind of way. Wrong! Instead I find myself wishing some member of my family would take the time to update my friends on the continuing health saga that dictates my current activities. After all, they only have children, spouses, jobs, homes and LIFE going on around them. Can you believe there have been no sibling arguments about who GETS to write an updated post?
Pat used to quote some comic who said "Sometimes I sits and thinks and sometimes I just sits." Guess I'll sit and think about what has happened since the last update!
Not much. Not much has changed. Get chemo for five days running (takes only a couple of hours). Blood counts play Limbo--how low can you go! Week after chemo my WBC is so low it scares pathologists who don't know me. This week is the week after. Friends visit or I may visit them, but I don't go to public places. I usually have to get transfusions for platelets and red blood cells--I get platelets much more often than red cells. I had both today. Getting blood products takes a long time, and God bless those who give blood generously for people like me.
Next week, I may creep above 0% for the smaller white blood cells. Right now, there are none. By the last week in the cycle, my numbers begin to rebound just in time to knock 'me down again. It's like bowling with Davis. I just about have those pins lined up and looking good and BLAM! Wish the reset button worked better.
Can you see why I don't write this stuff? Routine. Cyclical. Predictable.
There may be a twist come Labor Day. That is the week I would normally have the next round of chemo. This time he's pushing it back a week (Sept 8, my 65th birthday) so we can do a bone marrow biopsy (Sept 3) to see what, if any, effect this chemo is having. They will also take tissue to analyze for genetic mutations that might be addressed by oral medications. This is the test they tried in July to no success because I didn't have enough white blood cells to study. Put me to sleep, and you can take all you want! Callie and Davis will come for a week-long visit that week—they try to catch me when I am feeling my best!
After we get these results, there will be options to consider. I am planning to do a consultation with a leukemia center in mid to late Sept, probably Dana Faber Center which is associated with Harvard. They win because it is in Boston, and I’ll get to see Davis! (and Callie and Mike)
Nothing dramatic, I hope, will happen until after the very small but very special wedding of Kit and her fiancé, Demian Kato on Oct. 18. This wedding was envisioned quite differently from what is evolving. Destination wedding--not Chattanooga. 2015, not 2014. Small but maybe not as small as it is now planned to be. It just seems right to do it with family now in the case that something (I’m looking at you leukemia) compromise my ability to be a part of the wedding.
Pat used to quote some comic who said "Sometimes I sits and thinks and sometimes I just sits." Guess I'll sit and think about what has happened since the last update!
Not much. Not much has changed. Get chemo for five days running (takes only a couple of hours). Blood counts play Limbo--how low can you go! Week after chemo my WBC is so low it scares pathologists who don't know me. This week is the week after. Friends visit or I may visit them, but I don't go to public places. I usually have to get transfusions for platelets and red blood cells--I get platelets much more often than red cells. I had both today. Getting blood products takes a long time, and God bless those who give blood generously for people like me.
Next week, I may creep above 0% for the smaller white blood cells. Right now, there are none. By the last week in the cycle, my numbers begin to rebound just in time to knock 'me down again. It's like bowling with Davis. I just about have those pins lined up and looking good and BLAM! Wish the reset button worked better.
Can you see why I don't write this stuff? Routine. Cyclical. Predictable.
There may be a twist come Labor Day. That is the week I would normally have the next round of chemo. This time he's pushing it back a week (Sept 8, my 65th birthday) so we can do a bone marrow biopsy (Sept 3) to see what, if any, effect this chemo is having. They will also take tissue to analyze for genetic mutations that might be addressed by oral medications. This is the test they tried in July to no success because I didn't have enough white blood cells to study. Put me to sleep, and you can take all you want! Callie and Davis will come for a week-long visit that week—they try to catch me when I am feeling my best!
After we get these results, there will be options to consider. I am planning to do a consultation with a leukemia center in mid to late Sept, probably Dana Faber Center which is associated with Harvard. They win because it is in Boston, and I’ll get to see Davis! (and Callie and Mike)
Nothing dramatic, I hope, will happen until after the very small but very special wedding of Kit and her fiancé, Demian Kato on Oct. 18. This wedding was envisioned quite differently from what is evolving. Destination wedding--not Chattanooga. 2015, not 2014. Small but maybe not as small as it is now planned to be. It just seems right to do it with family now in the case that something (I’m looking at you leukemia) compromise my ability to be a part of the wedding.
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