After Lou's last chemo we were trying to remain optimistic about things turning around! But....the following week, we had record snowfall in Dallas - 12 inches! - and lost our electricity for almost 13 hours - from midnight Thursday night until almost 1p.m. on Friday! I kept the fireplace burning brightly all night long - but....it was fairly cold in the house and was starting to look pretty bleak when the lights and HEAT finally came back on! We were so very thankful! Lost most everything in the fridge and freezers - but......at least we got through! However, Lou hadn't told me that he was starting to feel sick! By Saturday evening - he had a full blown sore throat and 102.6 temp!!!! I called the Dr. and got a prescription of antibiotics for him - but..he was a VERY sick boy for several days! We did go to the Dr. on Monday the 15th - Lou's b-day! - for his bloodwork and Dr. visit for the Thursday chemo. News wasn't good! All of the liver function numbers and the CEA count were all high and troublesome! While we thought maybe the Oxaliplatin was holding the tumors back - the blood numbers are saying something else is going on! Then, last Thursday - the 18th - we went for chemo. Within 10 minutes of starting the Oxaliplatin - Lou had a huge reaction - numbness in his lips / face - trouble breathing - and full out flush to his face and neck. Teddie stopped the drugs immediately - started Lou on oxygen - and called the Dr. Needless to say - that's the last time he'll have Oxaliplatin! We waited about and hour and then Lou finished the other chemo drugs and we came home - exhausted and bewildered! Between Lou having been sick and still coping with the leftover congestion - he's been exhausted and in bed most of the last 3 days. His weight had plummeted another 6 lbs in the 10 days since he was last weighed - so...in 5 weeks - he's down 16 lbs! Between being sick and having no appetite - it's really taking a toll on him!
So....the new plan is that they'll try the one remaining drug at the next chemo on March 4 to see if it will help the out of control tumors in his liver! We're hoping and praying for the best - but...do have to say that Lou's attitude is waning and depression is beginning to get the better of him many days! We're doing everything possible to get him to eat - I really think it's like a vicious circle! The weight loss is definitely taking a toll on the way he feels - he feels bad much of the time - so, he doesn't eat - and it makes him weaker and feel worse!!! I try to work in as many calories as possible into anything that he'll eat - but....he eats so little of anything that it's really a challenge!
Please continue to pray for Lou, for his appetite, his attitude, and for this new chemo drug that we'll start on the 4th of March! Pray the new drug will work against the tumors and that the side effects will be nominal! Reading about this drug - he'll lose his hair almost guaranteed - which is something he's not happy about - but....it also has bigger side effects of nausea and diarrhea! First of all - as just discussed, he cannot afford to lose much more weight - he's down 55 lbs from his all time high - shortly before he got sick! - and if the nausea and diarrhea isn't controlled somewhat - I really think he'll opt to NOT take the drug.
Thank you for your continued prayer, support, and love! If you have time - please call Lou on his cell phone (not before noon Dallas time - please!) and chat with him! He so enjoys visiting in person or on the phone! He needs encouragement and at the same time he LOVES to reminisce about the past - all the "good old" days!!! It's a great diversion for him!!! His cell # is 972/839-8271. If he doesn't answer, please leave a message and number and he'll call you back! Sometimes he forgets to put his phone by him and/or he doesn't hear it sometimes! But...he'll LOVE to hear from you!
Appreciate all of you!
Love,
Deb
Monday, February 22, 2010
Sunday, February 7, 2010
Better / Mixed News
So....went Thursday morning - 2/4 for lab / Dr. / Chemo with apprehension - waiting to hear the news of the CT scan last Monday. Fortunately, the CT scan showed that the tumors have only grown about 5% since the last scan in December - about 2 months since that scan. 5% growth equals "stable" in the world of cancer / tumors! Meaning - it does appear the tumors are responding by not growing and they actually are slowing down growth since going back on the Oxaliplatin. So, for that, we are EXTREMELY thankful - PTL!
However, as I mentioned in the previous post - Lou has become allergic to the Oxaliplatin - or something! Will explain the "or something" in a minute! The Dr. was considering changing Lou from this drug - but...it really is the best drug regiment for this cancer - so, Lou and I were both reluctant to quit the drug as long as the Dr. agreed and if the Dr. thought that the allergy could be "controlled" with other drugs. When we told the Dr. our thoughts - he was in agreement that this is the best drug for Lou right now. He explained normally, there are 3 different regiments that are available for Lou's type of cancer, BUT...one of those regiments is ineffective if the tumors have mutations in them. Unfortunately, Lou's tumors DO have mutations - so.....Oxaliplatin and one other are the ONLY choices left for Lou in this battle. Meaning, if he cannot remain on the Oxaliplatin - we only have one other option and it may or may not contain / slow down the tumors in his liver! With all things considered and our willingness to try to stay on the Oxaliplatin and just fight the allergy with Benadryl and steroids - the Dr. thought this was the best option too.
Got to chemo lab and fortunately had our regular nurse Teddie! The Dr. prescribed a double dose of the Benadryl / steroid infusion to try to counteract the reaction to the Oxaliplatin infusion. Needless to say - Lou was quite sleepy / groggy after that infusion! The regiment is now a 5 minute infusion of antinausea medication, a 10 minute infusion of the Benadryl / steroid mixture, 30 minutes for the chemo drug Avastin, another 30 minute infusion of calcium / magnesium mixture to try to counteract the neuropathy in Lou's hands and feet caused by the Oxaliplatin, then the Dr. extended the next infusion from 2 hours to 4 hours - meaning the Leucavorin (another chemo drug) and Oxaliplatin that normally infuse together over 2 hours in the regiment - now had the Leucavorin going in over 2 hours with the Oxaliplatin infusing the same 2 hours - but...an additional 2 hours - making it infuse slower and longer to try to abate the allergic reaction. Then, after that infusion - there's another 30 minute infusion of calcium / magnesium before they disconnect all of that - give him a 5 minute "push" of Five FU - then attach the take home bag of Five FU that Lou wears for the next 48 hours. Sorry - but....thought it might be helpful to understand the time required for the chemo and wanted to also give a timeline to explain what happened this Thursday that I think is answered prayer!
Like clockwork based on the last few infusions - about 45 minutes into the Oxaliplatin infusion - Lou began to flush / get a very red rash on his face that progressed down to his neck. Over the next 45 minutes - with Teddie and I both checking him every few minutes - the rash began to be on his torso and down to about his waist. Per conversation between Teddie and the Dr. - she did call to give him updates about the progression of the rash. I prayed sitting in the darkened room - praying that the Lord would please help Lou's body tolerate the Oxaliplatin - that somehow, he wouldn't continue to have such a big reaction to the drug. And....about 2 hours into the infusion - amazingly - the rash cleared from his face - and over the next two hours cleared from his body! Teddie was amazed - saying she hadn't seen anything like this previously - that the rash without giving more Bendadryl / steroids or doing anything - had cleared! We were all so very happy and I told her and told Lou I had been praying for the rash /Lou's tolerance / reaction to get better so he could stay on this drug. Teddie was supposed to leave at 4:00 - but...she stayed until 5:00 when she was able to switch Lou's infusion from the last of the Oxaliplatin to the 30 minute calcium / magnesium infusion. Then she left and we waited for the last 30 minutes. When the nurse now in our charge came in - Lou's face had become "blood" red again! We were telling her about the way the rash had basically disappeared in the middle of the infusion of the Oxaliplatin - without any additional drugs or anything. This is the point where she began to tell us of a patient she had been taking care of previously who wasn't allergic to the Oxaliplatin - but....turned out she was actually allergic to the calcium / magnesium infusion! She told us about discussing the case with the woman's Dr. (different one than our Dr.!) - and by process of elimination - they were able to determine that yes, the allergic reaction - at least for this woman, was because of the calcium / magnesium infusions! In thinking through the timeline of the drugs and the reactions Lou had - it seems maybe there's a real possibility he's also having a reaction to the calcium/ magnesium and maybe NOT to the Oxaliplatin. If Teddie hadn't left early and we hadn't had this nurse - we wouldn't even know to look at this as a possibility! THIS WAS ANSWERED PRAYER and gives us hope that by being able to stay on this drug for at least a couple of more months - maybe there will be positive news on the liver tumors!
The other HUGE answer to prayer this week came because Lou had to go see a new neurologist to get his anti-seizure medication renewed this week. We LOVED our previous neurologist - she had taken care of both of my parents for many years! However, she left in November to go into research studies dealing in Parkinson's disease. The Dr. that replaced her at the practice is the new neurologist Lou went to see. When he reviewed Lou's medical history and saw the latest blood tests, etc. - he immediately said Lou shouldn't be on the medication he's on since it's the only anti-seizure med that metabolizes through the liver. He believes this is putting stress on Lou's liver and potentially some of the liver function numbers will improve if he switches to a different anti-seizure medication! So....Lou is weaning off of the old drug over the next 4 weeks and weaning on to the new one.
And, unfortunately, this week liver function numbers were worse again! So....am hoping / praying maybe some of the things will start turning around - big prayers!!! However, news overall was better than we had been anticipating AND how blessed we feel that the Lord provided two new sources this week with additional news that might help Lou's situation. We are so very thankful!
Lou spent almost all day Friday and Saturday in bed - this was a very difficult chemo! And, the neuropathy is very bad in his hands and feet since this infusion! I'm trying to rub and massage as much as possible - but....it's been a tough 3 days! He also had lost 6 pounds in the last 2 weeks - NOT GOOD! Nearing his all time low again! The nutritionist / dietician visited with us on Thursday and made him a protein shake, gave us recipes, and gave us some samples and the information on a new medical grade protein powder which I have now ordered to add to Lou's food. The Fellow Dr. working with our regular chemo Dr. also visited with us on Thursday and told Lou even if he doesn't feel like eating - he has to do the shakes or something with mega calories - doing it as a "medicine" regiment rather than trying to think of it as a meal since next to nothing appeals to him at this point! Lou agreed on Thursday, but....Friday he ate almost nothing - ditto Saturday! Finally today he ate some - not much - but some! I'm trying to "sneak" the protein powder and extra "calories" into everything - but...he only eats a few bites of anything / everything - so.....it's difficult! Need him to regain some appetite! Have him watching the cooking shows and have all kinds of things in the house to tempt him!
Lou's birthday is next Monday - Feb 15. He'll be 66! Last year, he was still so very sick, - we really didn't get to celebrate much for the 65th! However, this year - even though it's Valentine's day on Sunday, 14th - hope any of you living nearby might drop by for some cake / coffee / snacks on Sunday afternoon! I know Lou would be thrilled - he really loves to visit and see people! So...please drop by if you're available!
In the meantime, we so appreciate all of the love, prayers, notes, cards from you! Lou and I have the discussion often about how unfortunate it is that it takes getting a "death" sentence for most of us (or at least us!) to realize what's important in life and to appreciate the people (and each other) that have helped get us to this point in life! Remembering what brought us together and realizing the "noise" in every day life that is truly meaningless - well......better late than never - but...so much wasted time! Enjoy each day and be thankful for the people who bless you in your life!
Love to all!
Deb
However, as I mentioned in the previous post - Lou has become allergic to the Oxaliplatin - or something! Will explain the "or something" in a minute! The Dr. was considering changing Lou from this drug - but...it really is the best drug regiment for this cancer - so, Lou and I were both reluctant to quit the drug as long as the Dr. agreed and if the Dr. thought that the allergy could be "controlled" with other drugs. When we told the Dr. our thoughts - he was in agreement that this is the best drug for Lou right now. He explained normally, there are 3 different regiments that are available for Lou's type of cancer, BUT...one of those regiments is ineffective if the tumors have mutations in them. Unfortunately, Lou's tumors DO have mutations - so.....Oxaliplatin and one other are the ONLY choices left for Lou in this battle. Meaning, if he cannot remain on the Oxaliplatin - we only have one other option and it may or may not contain / slow down the tumors in his liver! With all things considered and our willingness to try to stay on the Oxaliplatin and just fight the allergy with Benadryl and steroids - the Dr. thought this was the best option too.
Got to chemo lab and fortunately had our regular nurse Teddie! The Dr. prescribed a double dose of the Benadryl / steroid infusion to try to counteract the reaction to the Oxaliplatin infusion. Needless to say - Lou was quite sleepy / groggy after that infusion! The regiment is now a 5 minute infusion of antinausea medication, a 10 minute infusion of the Benadryl / steroid mixture, 30 minutes for the chemo drug Avastin, another 30 minute infusion of calcium / magnesium mixture to try to counteract the neuropathy in Lou's hands and feet caused by the Oxaliplatin, then the Dr. extended the next infusion from 2 hours to 4 hours - meaning the Leucavorin (another chemo drug) and Oxaliplatin that normally infuse together over 2 hours in the regiment - now had the Leucavorin going in over 2 hours with the Oxaliplatin infusing the same 2 hours - but...an additional 2 hours - making it infuse slower and longer to try to abate the allergic reaction. Then, after that infusion - there's another 30 minute infusion of calcium / magnesium before they disconnect all of that - give him a 5 minute "push" of Five FU - then attach the take home bag of Five FU that Lou wears for the next 48 hours. Sorry - but....thought it might be helpful to understand the time required for the chemo and wanted to also give a timeline to explain what happened this Thursday that I think is answered prayer!
Like clockwork based on the last few infusions - about 45 minutes into the Oxaliplatin infusion - Lou began to flush / get a very red rash on his face that progressed down to his neck. Over the next 45 minutes - with Teddie and I both checking him every few minutes - the rash began to be on his torso and down to about his waist. Per conversation between Teddie and the Dr. - she did call to give him updates about the progression of the rash. I prayed sitting in the darkened room - praying that the Lord would please help Lou's body tolerate the Oxaliplatin - that somehow, he wouldn't continue to have such a big reaction to the drug. And....about 2 hours into the infusion - amazingly - the rash cleared from his face - and over the next two hours cleared from his body! Teddie was amazed - saying she hadn't seen anything like this previously - that the rash without giving more Bendadryl / steroids or doing anything - had cleared! We were all so very happy and I told her and told Lou I had been praying for the rash /Lou's tolerance / reaction to get better so he could stay on this drug. Teddie was supposed to leave at 4:00 - but...she stayed until 5:00 when she was able to switch Lou's infusion from the last of the Oxaliplatin to the 30 minute calcium / magnesium infusion. Then she left and we waited for the last 30 minutes. When the nurse now in our charge came in - Lou's face had become "blood" red again! We were telling her about the way the rash had basically disappeared in the middle of the infusion of the Oxaliplatin - without any additional drugs or anything. This is the point where she began to tell us of a patient she had been taking care of previously who wasn't allergic to the Oxaliplatin - but....turned out she was actually allergic to the calcium / magnesium infusion! She told us about discussing the case with the woman's Dr. (different one than our Dr.!) - and by process of elimination - they were able to determine that yes, the allergic reaction - at least for this woman, was because of the calcium / magnesium infusions! In thinking through the timeline of the drugs and the reactions Lou had - it seems maybe there's a real possibility he's also having a reaction to the calcium/ magnesium and maybe NOT to the Oxaliplatin. If Teddie hadn't left early and we hadn't had this nurse - we wouldn't even know to look at this as a possibility! THIS WAS ANSWERED PRAYER and gives us hope that by being able to stay on this drug for at least a couple of more months - maybe there will be positive news on the liver tumors!
The other HUGE answer to prayer this week came because Lou had to go see a new neurologist to get his anti-seizure medication renewed this week. We LOVED our previous neurologist - she had taken care of both of my parents for many years! However, she left in November to go into research studies dealing in Parkinson's disease. The Dr. that replaced her at the practice is the new neurologist Lou went to see. When he reviewed Lou's medical history and saw the latest blood tests, etc. - he immediately said Lou shouldn't be on the medication he's on since it's the only anti-seizure med that metabolizes through the liver. He believes this is putting stress on Lou's liver and potentially some of the liver function numbers will improve if he switches to a different anti-seizure medication! So....Lou is weaning off of the old drug over the next 4 weeks and weaning on to the new one.
And, unfortunately, this week liver function numbers were worse again! So....am hoping / praying maybe some of the things will start turning around - big prayers!!! However, news overall was better than we had been anticipating AND how blessed we feel that the Lord provided two new sources this week with additional news that might help Lou's situation. We are so very thankful!
Lou spent almost all day Friday and Saturday in bed - this was a very difficult chemo! And, the neuropathy is very bad in his hands and feet since this infusion! I'm trying to rub and massage as much as possible - but....it's been a tough 3 days! He also had lost 6 pounds in the last 2 weeks - NOT GOOD! Nearing his all time low again! The nutritionist / dietician visited with us on Thursday and made him a protein shake, gave us recipes, and gave us some samples and the information on a new medical grade protein powder which I have now ordered to add to Lou's food. The Fellow Dr. working with our regular chemo Dr. also visited with us on Thursday and told Lou even if he doesn't feel like eating - he has to do the shakes or something with mega calories - doing it as a "medicine" regiment rather than trying to think of it as a meal since next to nothing appeals to him at this point! Lou agreed on Thursday, but....Friday he ate almost nothing - ditto Saturday! Finally today he ate some - not much - but some! I'm trying to "sneak" the protein powder and extra "calories" into everything - but...he only eats a few bites of anything / everything - so.....it's difficult! Need him to regain some appetite! Have him watching the cooking shows and have all kinds of things in the house to tempt him!
Lou's birthday is next Monday - Feb 15. He'll be 66! Last year, he was still so very sick, - we really didn't get to celebrate much for the 65th! However, this year - even though it's Valentine's day on Sunday, 14th - hope any of you living nearby might drop by for some cake / coffee / snacks on Sunday afternoon! I know Lou would be thrilled - he really loves to visit and see people! So...please drop by if you're available!
In the meantime, we so appreciate all of the love, prayers, notes, cards from you! Lou and I have the discussion often about how unfortunate it is that it takes getting a "death" sentence for most of us (or at least us!) to realize what's important in life and to appreciate the people (and each other) that have helped get us to this point in life! Remembering what brought us together and realizing the "noise" in every day life that is truly meaningless - well......better late than never - but...so much wasted time! Enjoy each day and be thankful for the people who bless you in your life!
Love to all!
Deb
Monday, February 1, 2010
Praying for God's Healing Power
This morning Lou and I were at Baylor a few minutes before 8 for the latest CT scan. Unfortunately, the CEA # and also the liver function numbers in Lou's blood indicate that things are not going well. So, the Dr. wanted to see what's going on to try to figure out what we need to do to try to get things under control again. In the last chemo on January 21, even with the Benadryl and steroid infusions and a slower infusion time for the Oxaliplatin - he still had hives from the Oxaliplatin. He has become quite allergic to this drug. So, they didn't complete the bag of Oxaliplatin - but, he did get all of the others. And, since he's now allergic to the Oxaliplatin and it appears that it's not able to control the tumors as it did last spring - maybe it's meant to be for him to be on a different chemo drug. However, I'm nervous about the other drug that had been mentioned because there are some fairly severe side effects. Lou is very unhappy because it will make him lose his hair - I'm unhappy because most people who are on this drug have severe nausea and diarrhea! He had gained a little weight when we were at the Dr.'s office on 1/21 - but....since he's down almost 20 lbs and I'm having a difficult time finding enough things to get him to eat - being sick from the chemo drugs makes me very nervous! He really cannot afford to lose much more! We need prayers for his appetite to be better and prayers to protect him from some of the nausea / stomach side effects of the drugs! AND, biggest prayer of course, is to find something that will slow the tumors down! What a blessing if his own immune system could kick in and help fight off some of the bad! I've got him on several supplements and vitamin replacements to try to help his body keep some of the immunity! But...the chemo kills off his own immunity fighting abilities and it's hard to replenish enough for his body to REALLY fight! This is just all so very frustrating - we're still fighting and trying - just need extra prayers for extra strength this week! We'll get information from the CT scans that were done today on Thursday when we see the Dr. right before chemo. I feel sure the cocktail mix of chemo drugs will be different this week - so, don't know exactly what to expect - other than really hoping and praying the side effects won't be as bad as I've been told and what I've read AND praying whatever it is that it will KILL / SHRINK the tumors!! Will update further after chemo on Thursday! Thank you for so much for the notes, calls, thoughts, and prayers! WE appreciate everything so very much!
Love,
Deb
Love,
Deb
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