Another eventful morning for us - Phil woke up nauseated and had dry heaves which has been the norm for over a week now. I suggested we shower together because he was vey unsteady and that way I could make sure he wouldn't fall. By the end he was totally exhausted and had to go back to bed for awhile. He was nauseated again and we ran late to the appt.
Dr. Kossman took a good look at him and reexamined all his nodes and systems. The supraclavicular node measured 2 cm still but the axillary one is 3 cm at it's longest. His liver span is 1 cm down from it's maximum of 4 cm when he was hospitalized for the out of control blood sugar. His spleen is tender but not enlarged. His wt today is 190, up from 185 last week but is falsely elevated - that 5 lb difference represents water weight since he is hardly eating and has 3+ pitting edema in his feet and ankles, extending just to above his knees.
Of major significance, his platelets were only 22K today after being transfused on Friday. They were 20k on Friday before transfusion so are rapidly being destroyed. Also, it's been 4 days since his last thorocentesis when almost 2 liters of fluid were removed from around his left lung and he's now got about 3 inches difference in dullness to percussion again. This is the shortest interval yet in which his pleural effusion has developed.
The low platelets are Kossman's biggest concern today. It's hard to tell whether they are low from the Campath or from lymphoma in the marrow without doing a bone biopsy. But if there is active disease elsewhere it is very likely to be in the marrow as well. So, we're at a philosophical junction again. Do more Campath and risk a further plummet in platelets? Or stop Campath and watch platelets for a few days then restart treatment (risking further time with unopposed disease)? And how do we best judge the overall effectiveness of Campath?
Dr. Kossman also spoke the words "we're running out of bullets" and mentioned the drug Romidepsin as the real last resort. It is for cutaneous T cell lymphoma and maybe an orphan drug (approved for only one diagnosis) for that matter and not to be approved by insurance. It's in the $10k range per dose which, without approval or well documented studies regarding efficacy, presents a whole additional set of philosophical questions. Anyway, he told Phil he thought the disease had reduced by about 50% on Campath but was still very active and he still has significant issues with the effusions, edema, platelets, continued marrow involvement and nodes in chest, neck, axilla that aren't fully responding. He says most patients have full response by 12 weeks but that after 12 DOSES it is usual to reevaluate.
Phil chose to go on with treatment today. It is going to be a Herculean effort on his part. Tomorrow will be Ambisone. Then Dr. Kossman will see him on Wed. and recheck the CBC. Otherwise, Kossman wants to give the last 2 doses he has here in the office (IV) then re-evaluate where Phil is and where to go at that point.
And that's the update for today. I'm tired but managing. The kids are struggling and crying more often. They are sensing what is going on and are very aware of Phil's diminishing capacities. We all are and it gets more difficult to watch as the days pass. We love him and see him fighting and hope he will get better. Those of us who know him well can imagine a scenario wherein he'll never say quit. Can see the circumstances dictating the outcome for him rather than him ever crying "Uncle". Such is the way of my warrior. No surrender.
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Showing posts with label Campath. Show all posts
Showing posts with label Campath. Show all posts
Monday, October 31, 2011
Monday, October 17, 2011
A Better Day
Phil came home from the hospital on Saturday after his blood sugars came down to normal. For you medical people out there, he was metabolically acidotic (highest blood glucose was 588) and required 2 units of packed RBCs and a unit of platelets. The Campath had taken his hematocrit down from 30% to 24% in 48 hours. Seriously potent stuff.
Now it's Monday and he just finished his second dose of Campath at 5mg (3mg previously) and tolerated it fairly well. Just felt cold at the end but had no actual chills or other side effects like before. After the Campath a liter of normal saline was run in and he started feeling pretty lousy with a bit of nausea and vomiting but some anti-emetics helped with that. Overall, it was a much much better day!
Dr. Kossman examined him and feels he has responded "remarkably well" to the Campath considering what a small dose he was given. His lymph node size has diminished drastically from 2 cm to 1.5 cm in his supraclavicular area and there are no palpable lymph nodes in his underarm or in his neck where previously there were nodes there of 1 and 2 cm respectively. This is phenomenal considering Phil has only received 3% of the total recommended dosage!!
The roller coaster keeps on rolling and we keep hanging on. Today has been pretty good all things considered. We will go home and await the next dip and turn, thankful for the peacefulness of this day thus far. Thank you for your prayers and petitions.
Now it's Monday and he just finished his second dose of Campath at 5mg (3mg previously) and tolerated it fairly well. Just felt cold at the end but had no actual chills or other side effects like before. After the Campath a liter of normal saline was run in and he started feeling pretty lousy with a bit of nausea and vomiting but some anti-emetics helped with that. Overall, it was a much much better day!
Dr. Kossman examined him and feels he has responded "remarkably well" to the Campath considering what a small dose he was given. His lymph node size has diminished drastically from 2 cm to 1.5 cm in his supraclavicular area and there are no palpable lymph nodes in his underarm or in his neck where previously there were nodes there of 1 and 2 cm respectively. This is phenomenal considering Phil has only received 3% of the total recommended dosage!!
The roller coaster keeps on rolling and we keep hanging on. Today has been pretty good all things considered. We will go home and await the next dip and turn, thankful for the peacefulness of this day thus far. Thank you for your prayers and petitions.
Saturday, October 15, 2011
A Moment's Rest
I suppose if you wait long enough things do change. In our case, Phil's blood sugars came down, he was transfused with platelets and RBCs and we both got some much needed sleep. My migraine finally subsided and my hacking cough has settled down a bit. I hesitate to say that we both feel more like ourselves again. He certainly is looking more like himself than he has in about three weeks.
The first wave of the Cavalry (Tricia) left only to be reinforced by my sister Anita who drove down from Pasadena yesterday at rush hour - God bless her through and through. I arrived at the hospital to bring him home today to find him dozing off for a quick nap after breakfast. There's no hurry to get home other than the obvious desire to get outta here so I'm letting him catch some Zzzz's before the nurses come in and do their discharge song and dance. Then we'll be on our way home to rest up until Monday's appointment with Dr. Kossman for the next round of chemo.
Yep. The next round. It will be smaller than previously thought due to the infusion reaction and the chances of having another just like it. Phil does have the option of stopping the Campath and will have the weekend to consider this option. He know's it's his last best option for a chance at remission. He also knows there is the continued possibility of an infusion reaction with the next dose or two and the need for steroids should that happen. However, the literature suggests some people never have another reaction and that is what we are praying for. There is just no way of knowing.
His endocrinologist is concerned that there may be some other underlying metabolic issues at play with his blood sugar control. He did a cortisol suppression test to look at Phil's adrenal gland function while he was here in the hospital. Prior to the Campath and the high blood sugars Phil was having incredibly LOW blood sugars in the morning and I was having difficulty rousing him from sleep. His diabetes has been a very difficult disease to manage given the backdrop of lymphoma and the metabolic disturbances it creates. I do not know the outcome of the suppression test yet but know that Phil's clinical picture continues to be confusing and very challenging to manage. The road ahead narrows and his options lessen daily. Nothing is easy or clear cut anymore. I believe Monday will tell us a lot about the direction things will go from here.
Until then we will enjoy Phil feeling better and having energy. Olivia's 7th birthday will be celebrated with her friends at the bowling alley and we will praise God for the blessing and delight she is. There will be joy in our home, laughter and respite from the troubles of the last few weeks. We will enjoy this temporary peace. We will rest. We will be together. Blessed be His name!
The first wave of the Cavalry (Tricia) left only to be reinforced by my sister Anita who drove down from Pasadena yesterday at rush hour - God bless her through and through. I arrived at the hospital to bring him home today to find him dozing off for a quick nap after breakfast. There's no hurry to get home other than the obvious desire to get outta here so I'm letting him catch some Zzzz's before the nurses come in and do their discharge song and dance. Then we'll be on our way home to rest up until Monday's appointment with Dr. Kossman for the next round of chemo.
Yep. The next round. It will be smaller than previously thought due to the infusion reaction and the chances of having another just like it. Phil does have the option of stopping the Campath and will have the weekend to consider this option. He know's it's his last best option for a chance at remission. He also knows there is the continued possibility of an infusion reaction with the next dose or two and the need for steroids should that happen. However, the literature suggests some people never have another reaction and that is what we are praying for. There is just no way of knowing.
His endocrinologist is concerned that there may be some other underlying metabolic issues at play with his blood sugar control. He did a cortisol suppression test to look at Phil's adrenal gland function while he was here in the hospital. Prior to the Campath and the high blood sugars Phil was having incredibly LOW blood sugars in the morning and I was having difficulty rousing him from sleep. His diabetes has been a very difficult disease to manage given the backdrop of lymphoma and the metabolic disturbances it creates. I do not know the outcome of the suppression test yet but know that Phil's clinical picture continues to be confusing and very challenging to manage. The road ahead narrows and his options lessen daily. Nothing is easy or clear cut anymore. I believe Monday will tell us a lot about the direction things will go from here.
Until then we will enjoy Phil feeling better and having energy. Olivia's 7th birthday will be celebrated with her friends at the bowling alley and we will praise God for the blessing and delight she is. There will be joy in our home, laughter and respite from the troubles of the last few weeks. We will enjoy this temporary peace. We will rest. We will be together. Blessed be His name!
Thursday, October 13, 2011
More Crap Different Day
Well the hits keep coming and it is only natural to ask "how much can one person stand?" Apparently the answer to that question is "quite a lot" because to coin a popular 60's advertising phrase ~ Phil takes a licking and keeps on ticking.
This morning found him admitted to Alvarado Hospital's 3 South with very high blood sugars, dehydration and nausea and vomiting. The last 48 hours have been brutal to say the least and absolutely heroically endured. Phil had been struggling with nausea that barely responded to his medication, dry heaves and vomiting and the discomforts that come with blood sugars in the 400-500 range (normal being 80-120). He's had no appetite, was dry mouthed and thirsty all the time and couldn't sleep. Incidentally, every bone in his body hurts, he's stiff all over and unstable when walking too. Sheesh. Brutal, brutal brutal.
Dr. Kossman checked Phil over thoroughly this morning and ordered an MRI of Phil's head to check on the status of the mucor, a chest xray and blood cultures to rule out infection as an additional cause of the high blood sugars and a whole host of labs. (As of this post his MRI and chest xray are unchanged from previous). Phil has a slightly enlarged liver which could be from progression of the lymphoma ~ we won't know that until he has a CT scan of his abdomen tomorrow. This could all be secondary to the Campath so it is on hold indefinitely until things settle down. The first priority is stabilizing the blood sugar and returning his metabolism to a normal state. He will have one on one nursing with an IV insulin drip and hourly blood sugar checks until his blood sugar is normalized. Each hour the sugar has been coming down and he has felt better with the fluids, well enough to eat some of Alvarado's fine fare.
Unfortunately, his platelets and hematocrit are very low and he will be getting both platelets and RBCs today. This is either a result of the Campath or from furthering disease in the marrow - a real shit show either way. Fortunately we live in an age of pharmaceuticals and transfusions so with a little tincture of time and some good nursing Phil will be feeling about 500% better than he did this morning. I plan on bugging out of here soon to get some much needed sleep for a few hours then I'll be back in the morning to see what's transpired. Lord willing, there will be a bit more breathing room.
This morning found him admitted to Alvarado Hospital's 3 South with very high blood sugars, dehydration and nausea and vomiting. The last 48 hours have been brutal to say the least and absolutely heroically endured. Phil had been struggling with nausea that barely responded to his medication, dry heaves and vomiting and the discomforts that come with blood sugars in the 400-500 range (normal being 80-120). He's had no appetite, was dry mouthed and thirsty all the time and couldn't sleep. Incidentally, every bone in his body hurts, he's stiff all over and unstable when walking too. Sheesh. Brutal, brutal brutal.
Dr. Kossman checked Phil over thoroughly this morning and ordered an MRI of Phil's head to check on the status of the mucor, a chest xray and blood cultures to rule out infection as an additional cause of the high blood sugars and a whole host of labs. (As of this post his MRI and chest xray are unchanged from previous). Phil has a slightly enlarged liver which could be from progression of the lymphoma ~ we won't know that until he has a CT scan of his abdomen tomorrow. This could all be secondary to the Campath so it is on hold indefinitely until things settle down. The first priority is stabilizing the blood sugar and returning his metabolism to a normal state. He will have one on one nursing with an IV insulin drip and hourly blood sugar checks until his blood sugar is normalized. Each hour the sugar has been coming down and he has felt better with the fluids, well enough to eat some of Alvarado's fine fare.
Unfortunately, his platelets and hematocrit are very low and he will be getting both platelets and RBCs today. This is either a result of the Campath or from furthering disease in the marrow - a real shit show either way. Fortunately we live in an age of pharmaceuticals and transfusions so with a little tincture of time and some good nursing Phil will be feeling about 500% better than he did this morning. I plan on bugging out of here soon to get some much needed sleep for a few hours then I'll be back in the morning to see what's transpired. Lord willing, there will be a bit more breathing room.
Monday, October 10, 2011
The Hardest Times
I've had some tough times in life for certain but these last few weeks have been the toughest. I thought about keeping a record of all the mini-tragedies and the macro-drama but I lost heart and lost count after awhile. Besides, after a point, what is the point? It only makes me feel like a pathetic sad-sack. Suffice it to say that a lot more shit has gone down around here since the last post. In general terms, Phil has continued to slowly deteriorate, my children and I have continue to watch it, my TO DO list grew and I became engulfed by it, and lastly I succumbed to yet another heinous migraine episode which was not ameliorated in the slightest by the Urgent Care Cocktail I'd been prescribed. I hit my wall hard and knew it was time to call in reinforcements.
Enter Tricia Reece. My best friend and the hardest working woman I know from Washington. She has loved my family for over a decade and has seen me through every major crisis. We are twin sisters from different mothers if you know what I mean and there isn't anything we wouldn't do for each other. She also happens to adore Phil and my kids and they her. She rocks. Since her arrival she's cleaned my bathrooms, steam cleaned my carpets, cooked, folded laundry, entertained my parents, doted on Phil, taken Olivia on a date and endured the puppy licking her toes. That's love. Today she's taking the kids shopping and to the beach so Phil and I can do medical appointments. Yes, she rocks. Love love love her.
Phil and I will be seeing Dr. Kossman to review the PET scan and hear about the progression of disease in his chest and pleura and hopefully Phil will get yet another thorocentesis. You know he is feeling badly when he asks for one. He has been extremely weak (as weak as I've seen him) and very short of breath. He is exhausted by taking a shower. Today is the day he is to start his new chemotherapy as well - Campath-1H, a monoclonal antibody designed to attack and kill off T-cells. It kills all T-cells so he will be very immunocompromised. It will be a big day and there will be a lot to talk about and hopefully accomplish. I have no idea how long we will be gone when we step out the door. I have no idea what we will hear when Kossman tells us about the report or what to expect from the chemo. But as ever, I do know God will be with us. I do know Tricia will be with my kids. I know we will be held in the hands of love and will be OK. I know that at the end of the day we will know more than we do now and that Phil's suffering will look different than it does now.
Enter Tricia Reece. My best friend and the hardest working woman I know from Washington. She has loved my family for over a decade and has seen me through every major crisis. We are twin sisters from different mothers if you know what I mean and there isn't anything we wouldn't do for each other. She also happens to adore Phil and my kids and they her. She rocks. Since her arrival she's cleaned my bathrooms, steam cleaned my carpets, cooked, folded laundry, entertained my parents, doted on Phil, taken Olivia on a date and endured the puppy licking her toes. That's love. Today she's taking the kids shopping and to the beach so Phil and I can do medical appointments. Yes, she rocks. Love love love her.
Phil and I will be seeing Dr. Kossman to review the PET scan and hear about the progression of disease in his chest and pleura and hopefully Phil will get yet another thorocentesis. You know he is feeling badly when he asks for one. He has been extremely weak (as weak as I've seen him) and very short of breath. He is exhausted by taking a shower. Today is the day he is to start his new chemotherapy as well - Campath-1H, a monoclonal antibody designed to attack and kill off T-cells. It kills all T-cells so he will be very immunocompromised. It will be a big day and there will be a lot to talk about and hopefully accomplish. I have no idea how long we will be gone when we step out the door. I have no idea what we will hear when Kossman tells us about the report or what to expect from the chemo. But as ever, I do know God will be with us. I do know Tricia will be with my kids. I know we will be held in the hands of love and will be OK. I know that at the end of the day we will know more than we do now and that Phil's suffering will look different than it does now.
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