Today was a better day! She is still in ICU. Linda is more alert and getting a little feisty - always a good sign in a patient.
The kidney function has returned to normal. BP under control.
The 2 problems now are still the dangerously low WBC (still 200) with the infection risk; and her malnutrition and weight loss.
She is getting the shots to boost the WBC and any day now it should start recovering.
She has had 24 hours of IV feedings by 6pm this evening and it is starting to show in her alertness etc. She is drinking a little despite the stomach tube, but the swallowing is no longer painful, so the fungal infection in her esophagus must be clearing with the antibiotics. Yeah!
She is making a 'Bucket List' of things she wants to do when she is better. I didn't have the heart to tell her that the Bucket List is for when you won't get better. But anyway she is planning for the future and that is wonderful.
Monday, May 30, 2011
Saturday, May 28, 2011
Linda's Lymphoma update 5-28-11
Linda continues to make slow improvement, even as new complications crop up.
She was transferred to ICU on Friday so the doctors could give her Dopamine to improve her BP and renal function. She is still getting loads of IV fluids and the Dopamine keeps her BP about 110 systolic.
Another problem has been her profound loss of appetite and weight loss. It was even painful for her to swallow liquids. She likely had a fungal infection in her esophagus from the low immune system, so she is taking antibiotics for that and as of today, she still finds it difficult to swallow. They inserted another central IV line today, so she could start getting IV feedings to regain her strength.
Her main problems and status of them are as follows.....
1. Low BP and dehydration - under control with fluids and Dopamine
2. poor kidney function - much improved with the fluids and Dopamine
3. low WBC - still only 100 today, but the Neupogen should kick in soon and cure this. But until it gets to normal, she is at high risk for any and all infections
4. wt. loss and loss of appetite - being treated as above for fungus infection and IV feedings to begin Sunday
Thanks for all your prayers and thanks to our minister, Mark Cooper, who visited Friday afternoon and gave us communion in the ICU.
Several people have notified me that they cannot leave comments, so I changed the default settings and it should be easier to do now. Thanks for lettting me know.
She was transferred to ICU on Friday so the doctors could give her Dopamine to improve her BP and renal function. She is still getting loads of IV fluids and the Dopamine keeps her BP about 110 systolic.
Another problem has been her profound loss of appetite and weight loss. It was even painful for her to swallow liquids. She likely had a fungal infection in her esophagus from the low immune system, so she is taking antibiotics for that and as of today, she still finds it difficult to swallow. They inserted another central IV line today, so she could start getting IV feedings to regain her strength.
Her main problems and status of them are as follows.....
1. Low BP and dehydration - under control with fluids and Dopamine
2. poor kidney function - much improved with the fluids and Dopamine
3. low WBC - still only 100 today, but the Neupogen should kick in soon and cure this. But until it gets to normal, she is at high risk for any and all infections
4. wt. loss and loss of appetite - being treated as above for fungus infection and IV feedings to begin Sunday
Thanks for all your prayers and thanks to our minister, Mark Cooper, who visited Friday afternoon and gave us communion in the ICU.
Several people have notified me that they cannot leave comments, so I changed the default settings and it should be easier to do now. Thanks for lettting me know.
Friday, May 27, 2011
Linda's Lymphoma update 5-27-11
Linda is back in the hospital and I finally have a moment to update the blog.
The oncologist said this new chemo would be very tough. I can only think of "hell on wheels" to describe it. After a couple days of nausea and vomiting at the beginning of the week, on Wednesday she changed to uncontrolled diarrhea (another side effect). She became so dehydrated yesterday (BP 78/40) that she couldn't sit up or stand, so we had to call an ambulance to take her back to the hospital for IV fluids etc. Her WBC was 200 in the hospital last night with a nice round 100 each of neutrophils and lymphocytes. So she is on prophylactic IV antibiotics as well.
We did get to the consult at Methodist Hospital (Dr. Ram Kamble) on Wednesday for the Bone Marrow Transplant (Plan B - after the failure of the inital chemo). The whole team that we met was wonderful. He described the whole process to us and I'll summarize it briefly. She will need 2 more rounds of this current chemo regimen (Oh joy). Then she will need another bone marrow. The marrow at that time has to be clean (no cancer visible) and then they willl harvest her stem cells from the peripheral blood like a blood donation. This stem cells are frozen.
She will enter the hospital for 3 weeks (mid-July). Week 1 is 'industrial' strength chemo of a new regimen. After the chemo, on day 7 or 8, she is infused her stem cells. Week 2 will be horrible with the WBC at essentially zero while waiting for the stem cells to repopulate her marrow and begin making new blood cells. He said she will have 4-5 days of diarrhea, mouth ulcers and God knows what else. Week 3 she will gradually recover and get her strength back and be ready for discharge. She will be in isolation the whole time, but can have visitors - gowned etc.
There is less than 1% mortality with the treatment (usually infection). If the transplant is successful (45-50%) she will essentially be cured and will need regular follow-up. There will be 2x yearly chemo with just Rituxin (very mild) chemo.
We didn't get into the plan C if it isn't successful.
Keep praying for her to keep up her strength both mentally and physically, and for the success of the treatment. Thanks.
The oncologist said this new chemo would be very tough. I can only think of "hell on wheels" to describe it. After a couple days of nausea and vomiting at the beginning of the week, on Wednesday she changed to uncontrolled diarrhea (another side effect). She became so dehydrated yesterday (BP 78/40) that she couldn't sit up or stand, so we had to call an ambulance to take her back to the hospital for IV fluids etc. Her WBC was 200 in the hospital last night with a nice round 100 each of neutrophils and lymphocytes. So she is on prophylactic IV antibiotics as well.
We did get to the consult at Methodist Hospital (Dr. Ram Kamble) on Wednesday for the Bone Marrow Transplant (Plan B - after the failure of the inital chemo). The whole team that we met was wonderful. He described the whole process to us and I'll summarize it briefly. She will need 2 more rounds of this current chemo regimen (Oh joy). Then she will need another bone marrow. The marrow at that time has to be clean (no cancer visible) and then they willl harvest her stem cells from the peripheral blood like a blood donation. This stem cells are frozen.
She will enter the hospital for 3 weeks (mid-July). Week 1 is 'industrial' strength chemo of a new regimen. After the chemo, on day 7 or 8, she is infused her stem cells. Week 2 will be horrible with the WBC at essentially zero while waiting for the stem cells to repopulate her marrow and begin making new blood cells. He said she will have 4-5 days of diarrhea, mouth ulcers and God knows what else. Week 3 she will gradually recover and get her strength back and be ready for discharge. She will be in isolation the whole time, but can have visitors - gowned etc.
There is less than 1% mortality with the treatment (usually infection). If the transplant is successful (45-50%) she will essentially be cured and will need regular follow-up. There will be 2x yearly chemo with just Rituxin (very mild) chemo.
We didn't get into the plan C if it isn't successful.
Keep praying for her to keep up her strength both mentally and physically, and for the success of the treatment. Thanks.
Tuesday, May 24, 2011
Linda's Lymphoma update 5-24-11
That dreaded nausea and vomiting from cisplatin is rearing its ugly head. According to the oncologist, it may last up to a week after the infusion of the drug.
Well Linda has had it the last 2 days - horrible nausea and some vomiting.
Fortunatley, meclizine and reglan seem to be helping.
She has started the daily Neupogen shots again and has had 2. She is still pain free (thanks be to God), but in previous episodes, the bone pain from the Neupogen starts after about a week of shots. So we will see.
Tomorrow is our consult at Methodist Hospital for the BMT (Bone Marrow Transplant), but because her marrow is full of lymphoma, she will likely get a stem cell transplant. We will find out tomorrow.
Well Linda has had it the last 2 days - horrible nausea and some vomiting.
Fortunatley, meclizine and reglan seem to be helping.
She has started the daily Neupogen shots again and has had 2. She is still pain free (thanks be to God), but in previous episodes, the bone pain from the Neupogen starts after about a week of shots. So we will see.
Tomorrow is our consult at Methodist Hospital for the BMT (Bone Marrow Transplant), but because her marrow is full of lymphoma, she will likely get a stem cell transplant. We will find out tomorrow.
Sunday, May 22, 2011
Linda's Lymphoma update 5-22-11
Linda finished the 5 day course of chemo by 6pm tonight and was discharged home.
Doing well - no pain meds except the patch. Awesome! I hope this pain free period continues, as it is the first time in 6 months.
Wednesday she has appointment at Methodist re: Bone Marrow Transplant
Doing well - no pain meds except the patch. Awesome! I hope this pain free period continues, as it is the first time in 6 months.
Wednesday she has appointment at Methodist re: Bone Marrow Transplant
Saturday, May 21, 2011
Linda's Lymphoma update 5-21-11
She is in her 4th of 5 chemo treatments this evening. Not as good a day as she didn't sleep well last night.
She had some abdominal pain after supper and needed a pain shot for the first time since Thursday morning.
Very homesick, but will be home on Monday 5-23-11 - God willing.
By the way, these photos are from Carmel California, our favorite vacation destination since 1982.
She had some abdominal pain after supper and needed a pain shot for the first time since Thursday morning.
Very homesick, but will be home on Monday 5-23-11 - God willing.
By the way, these photos are from Carmel California, our favorite vacation destination since 1982.
Friday, May 20, 2011
Linda's Lymphoma update 5-20-11
We are 5 months into this trip/experience of a potentially fatal disease. My family and I spend a lot of time on the phone updating others with the latest news and information, so I thought starting a blog and posting the updates here, might save everyone involved ,a lot of time and questions.
The most serious problem we have encountered is severe incapacitating/unrelenting pain both from the lymphoma and the treatment. It is difficult to watch your loved one having pain described as a 15-20 on a scale of 1-10.
So now I will give a brief summary of how we got to this point in time. The first symptoms started In late October 2010 with Linda having a lot of back pain. She had been doing a lot of bending, lifting etc while moving her mother into an assisted living center from her apartment. We assumed that the pain was from this, but it continued and got worse in November after the move was completed. A back Xray and MRI were normal. The pain then moved into her abdomen and thighs. Finally, by mid-December, the pain was so severe that she need to be admitted. A workup was normal and she was prescribed pain meds. These really didn't help much. The pain just kept increasing. After Christmas, her blood work showed LDH up to 1500 from normal (<280) in November. LDH is a marker for lymphoma. She also had an intermittent fever, another symptom.
After New Year's, an oncologist was consulted and the bone marrow confirmed large cell non-Hodgkin's Lymphoma, stage 4. A PET scan showed involvement of spine, ribs, humeri and femurs, thus accounting for the intense limb and back pain. Pain control was achieved with Duragesic patches and Dilaudid pills Q4H.
Dr Quraishi, her oncologist at Pasadena Bayshore Medical Center, started her course of chemo in January. The regime was CHOP + R. That is cyclophosphamide, adriamycin, vincristine, prednisone and Rituxin. This was given as an outpatient every 3 weeks. Each course was followed with daily Neupogen injections for 10 days to help the bone marrow recover and boost the white cells to fight infection. The course of treatment was scheduled to be 6-8 treatments. The prognosis was 80% chance for remision, but only 50% for a permanent remission. As she was already in Stage 4, her chances were less than those quoted. However, we were cautiously optimistic.
Of course she lost her hair and that was traumatic, but she is used to wearing a scarf now. In the grand scheme of life, this is just a nuisance. The bone pain melted away fairly rapidly with the first 2 treatments. However, the main side effect of the Neupogen shots is bone pain.Unfortunatley, she got that. So, now she would be free of pain until she completed the course of 10 shots and then would have a recurrence of intense bone pain - chest, legs, back and abdomen - always moving around to different locations. This would last for about a week after the shots were completed. She would only get partial relief of pain 4-5 out of 10 with the Dilaudid pills and patch during this time.
The plan was to restage after the 6th treatment (April 26th). The WBC (white count) got extremely low and the oncologist wanted an extra 2 Neupogen shots (total 12). The pain became so severe with these extra shots that she needed hospitalization again last week (May 10) for IV pain relief. He repeated the bone marrow, CT abdomen and LDH. The LDH was still elevated and the CT showed a new tumor in the liver where none had been before, so the lymphoma had become resistant to the chemo.
The next step is to do a Bone Marrow Transplant. Dr. Quraishi has arranged a consultation at Methodist Hospital in Houston for next Wednesday May 25th to get that started. In the meantime, this aggressive tumor has to be continuously treated, so a new regimen was started this week. It requires 5 days in hospital. The new regimen is Ifex, Etoposide, cisplatin, Decadron, and Rituxin.
The pain was intolerable during this admission and even with Q3H IV Dilaudid, it was only relieved to a 5-6.
On the night of May 18th as her chemo was begun, I prayed extra hard to get her some pain relief. The next morning when I got to the hospital to visit her at 8:00am, the pain was gone completely! She has not needed any meds other than her patch for 24 hours now. A miracle!
As far as tolerating the new regimen, she vomited one time with the first treatment, but not with the second one last night. Thank God for the new anti-nausea drug Aloxi, as the cisplatin is renowned for causing horrendous nausea and vomiting.
She had another great day today without pain. She even asked to have a meal from Jack-in-the-Box for supper, so I went and got it. This is the most she has eaten in the last 2 weeks.
If interested in more info on theses chemo drugs, I found this helpful web site.
Linda wants to thank everyone for the get well cards that she has received. She really enjoys getting them. Thanks also to those who have helped out with meals, driving to the doctors for her shots etc.And especially thanks for all the prayers. We know that they help.
She will be in hospital to complete this round of chemo until May 23 or 24th. The she will need up to 15 daily Neupogen shots to restore the WBC.
When she is feeling good, she would enjoy visits from friends. Please call first either her cell (281-788-8277) if she is in the hospital or our home phone (281-996-1463) when she is back at the house.
Please feel free to post comments, questions etc and we will try to answer them promptly.
Also, check back regularly to get the latest updates on how she is managing.
The most serious problem we have encountered is severe incapacitating/unrelenting pain both from the lymphoma and the treatment. It is difficult to watch your loved one having pain described as a 15-20 on a scale of 1-10.
So now I will give a brief summary of how we got to this point in time. The first symptoms started In late October 2010 with Linda having a lot of back pain. She had been doing a lot of bending, lifting etc while moving her mother into an assisted living center from her apartment. We assumed that the pain was from this, but it continued and got worse in November after the move was completed. A back Xray and MRI were normal. The pain then moved into her abdomen and thighs. Finally, by mid-December, the pain was so severe that she need to be admitted. A workup was normal and she was prescribed pain meds. These really didn't help much. The pain just kept increasing. After Christmas, her blood work showed LDH up to 1500 from normal (<280) in November. LDH is a marker for lymphoma. She also had an intermittent fever, another symptom.
After New Year's, an oncologist was consulted and the bone marrow confirmed large cell non-Hodgkin's Lymphoma, stage 4. A PET scan showed involvement of spine, ribs, humeri and femurs, thus accounting for the intense limb and back pain. Pain control was achieved with Duragesic patches and Dilaudid pills Q4H.
Dr Quraishi, her oncologist at Pasadena Bayshore Medical Center, started her course of chemo in January. The regime was CHOP + R. That is cyclophosphamide, adriamycin, vincristine, prednisone and Rituxin. This was given as an outpatient every 3 weeks. Each course was followed with daily Neupogen injections for 10 days to help the bone marrow recover and boost the white cells to fight infection. The course of treatment was scheduled to be 6-8 treatments. The prognosis was 80% chance for remision, but only 50% for a permanent remission. As she was already in Stage 4, her chances were less than those quoted. However, we were cautiously optimistic.
Of course she lost her hair and that was traumatic, but she is used to wearing a scarf now. In the grand scheme of life, this is just a nuisance. The bone pain melted away fairly rapidly with the first 2 treatments. However, the main side effect of the Neupogen shots is bone pain.Unfortunatley, she got that. So, now she would be free of pain until she completed the course of 10 shots and then would have a recurrence of intense bone pain - chest, legs, back and abdomen - always moving around to different locations. This would last for about a week after the shots were completed. She would only get partial relief of pain 4-5 out of 10 with the Dilaudid pills and patch during this time.
The plan was to restage after the 6th treatment (April 26th). The WBC (white count) got extremely low and the oncologist wanted an extra 2 Neupogen shots (total 12). The pain became so severe with these extra shots that she needed hospitalization again last week (May 10) for IV pain relief. He repeated the bone marrow, CT abdomen and LDH. The LDH was still elevated and the CT showed a new tumor in the liver where none had been before, so the lymphoma had become resistant to the chemo.
The next step is to do a Bone Marrow Transplant. Dr. Quraishi has arranged a consultation at Methodist Hospital in Houston for next Wednesday May 25th to get that started. In the meantime, this aggressive tumor has to be continuously treated, so a new regimen was started this week. It requires 5 days in hospital. The new regimen is Ifex, Etoposide, cisplatin, Decadron, and Rituxin.
The pain was intolerable during this admission and even with Q3H IV Dilaudid, it was only relieved to a 5-6.
On the night of May 18th as her chemo was begun, I prayed extra hard to get her some pain relief. The next morning when I got to the hospital to visit her at 8:00am, the pain was gone completely! She has not needed any meds other than her patch for 24 hours now. A miracle!
As far as tolerating the new regimen, she vomited one time with the first treatment, but not with the second one last night. Thank God for the new anti-nausea drug Aloxi, as the cisplatin is renowned for causing horrendous nausea and vomiting.
She had another great day today without pain. She even asked to have a meal from Jack-in-the-Box for supper, so I went and got it. This is the most she has eaten in the last 2 weeks.
If interested in more info on theses chemo drugs, I found this helpful web site.
Linda wants to thank everyone for the get well cards that she has received. She really enjoys getting them. Thanks also to those who have helped out with meals, driving to the doctors for her shots etc.And especially thanks for all the prayers. We know that they help.
She will be in hospital to complete this round of chemo until May 23 or 24th. The she will need up to 15 daily Neupogen shots to restore the WBC.
When she is feeling good, she would enjoy visits from friends. Please call first either her cell (281-788-8277) if she is in the hospital or our home phone (281-996-1463) when she is back at the house.
Please feel free to post comments, questions etc and we will try to answer them promptly.
Also, check back regularly to get the latest updates on how she is managing.
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