R says the pain is nearly completely gone after the biopsy surgery. (He's thrilled to be off painkillers) He's still feeling nauseous and feverish on a pretty regular basis, but overall his health has improved and he's looking forward to starting chemo on Monday.
He is still coughing up a bit of blood. I will be glad when those tumors are gone, so they will stop causing bleeding in the lungs.
Saturday, November 14, 2009
Report from doctor
R saw the Oncologist yesterday in preparation for his treatments.
He had a good couple of hours yesterday. He has nausea and fever most of the time which makes him weak. The last two days he has been able to eat a little more. Last night he wasn't able to keep food down.
Was given a little more specific cancer diagnosis: Germ Cell, nonseminoma choriocarcinoma.
According to the American Cancer Society website:
"Choriocarcinomas: This is a very rare and aggressive type of testicular cancer that occurs in adults. These cancers are likely to spread rapidly to distant organs of the body, including the lungs, bone, and brain. Pure choriocarcinoma does not often occur in the testicles. More often, choriocarcinoma cells are present with other types of non-seminoma cells in a mixed germ cell tumor. This type of tumor increases blood levels of HCG."
The prognosis is 50%, 5 year survival rate with treatment. We continue to pray for a miracle.
R will have four rounds of chemotherapy starting Monday. Five days of treatment (staying in the hospital those five days). Then home for two weeks to recover. Then back for five days of treatment - repeated for the four rounds of chemotherapy. Afterwhich they will see if there is any tumor left or any scar tissue which will need to be removed with surgery.
We will maintain hope and a positive outlook that R. will recover and will be with us for a much longer time.
He had a good couple of hours yesterday. He has nausea and fever most of the time which makes him weak. The last two days he has been able to eat a little more. Last night he wasn't able to keep food down.
Was given a little more specific cancer diagnosis: Germ Cell, nonseminoma choriocarcinoma.
According to the American Cancer Society website:
"Choriocarcinomas: This is a very rare and aggressive type of testicular cancer that occurs in adults. These cancers are likely to spread rapidly to distant organs of the body, including the lungs, bone, and brain. Pure choriocarcinoma does not often occur in the testicles. More often, choriocarcinoma cells are present with other types of non-seminoma cells in a mixed germ cell tumor. This type of tumor increases blood levels of HCG."
The prognosis is 50%, 5 year survival rate with treatment. We continue to pray for a miracle.
R will have four rounds of chemotherapy starting Monday. Five days of treatment (staying in the hospital those five days). Then home for two weeks to recover. Then back for five days of treatment - repeated for the four rounds of chemotherapy. Afterwhich they will see if there is any tumor left or any scar tissue which will need to be removed with surgery.
We will maintain hope and a positive outlook that R. will recover and will be with us for a much longer time.
Thursday, November 12, 2009
Thursday update
R was kept in the hospital after the biopsy Tuesday because of low oxygen levels. They released him Wednesday afternoon, so he was home when we arrived here.
During the surgery for the biopsy, they also cleaned out the blood that had collected in his lungs. It required moving one lung to the side which caused it to collapse some. That's what they were monitoring.
It's very good to be here with R and J.
Last night he was able to sleep quite well so we are glad for that.
Thursday morning he is in a lot of pain from the surgery which is helped somewhat by pain medication. We are watching game shows this morning for a divsersion.
I'm off to go buy some popcorn for Ross. He has been able to eat more today than he has in the last 2 weeks so we are hoping that is a positive thing.
During the surgery for the biopsy, they also cleaned out the blood that had collected in his lungs. It required moving one lung to the side which caused it to collapse some. That's what they were monitoring.
It's very good to be here with R and J.
Last night he was able to sleep quite well so we are glad for that.
Thursday morning he is in a lot of pain from the surgery which is helped somewhat by pain medication. We are watching game shows this morning for a divsersion.
I'm off to go buy some popcorn for Ross. He has been able to eat more today than he has in the last 2 weeks so we are hoping that is a positive thing.
Tuesday, November 10, 2009
Not good news
Word from R's biopsy: Nonseminoma Germ cell cancer. According to the research I've done, this is the worst germ cell cancer. Prognosis is 50% after chemotherapy, especially if the tumor has not invaded the surrounding lung areas.
We know from the previous CAT scan that he has tumors in both lungs.
I'm staying as hopeful and positive as possible - especially because we get to see him tomorrow and there is a strong support system praying for him. We can only put our faith and trust in God and accept His will.
We know from the previous CAT scan that he has tumors in both lungs.
I'm staying as hopeful and positive as possible - especially because we get to see him tomorrow and there is a strong support system praying for him. We can only put our faith and trust in God and accept His will.
Monday, November 9, 2009
Flying to be with R
My husband and I are flying this week to be with R and J. We wanted to spend this time with them before R starts his chemotherapy. We had a chat with him on videocam last night. He is very ill but we were able to share some good laughs. We are looking forward to seeing him soon.
Saturday, November 7, 2009
Chemo R will have
“How long is chemo and is it all done inpatient?”
There are “on” weeks and “off” weeks. Chemo will be five days a week on the on weeks. On the off weeks there’s only one day a week for one of the chemicals. Best case, I think, if things go pretty well (red and white blood cell and platelet counts go back up faster rather than slower), the treatment will be every three weeks: two weeks off, one week on, and so on ’til the cancer’s gone.
We have the possibility of the option in the future of doing subsequent rounds outpatient so we’re released home at night. It’s not always possible, but it might be for us because he has a caretaker who would be rigorous about some of the requirements and because he would be rigorous about it too. However, we will see how it goes. Our medical and personal teams combined (given all the information) feel good about starting in the hospital and monitoring from there.
There are “on” weeks and “off” weeks. Chemo will be five days a week on the on weeks. On the off weeks there’s only one day a week for one of the chemicals. Best case, I think, if things go pretty well (red and white blood cell and platelet counts go back up faster rather than slower), the treatment will be every three weeks: two weeks off, one week on, and so on ’til the cancer’s gone.
We have the possibility of the option in the future of doing subsequent rounds outpatient so we’re released home at night. It’s not always possible, but it might be for us because he has a caretaker who would be rigorous about some of the requirements and because he would be rigorous about it too. However, we will see how it goes. Our medical and personal teams combined (given all the information) feel good about starting in the hospital and monitoring from there.
My son's Cancer Updates
Life can punch you in the gut when you learn that your child has cancer.
Learning about this came the same week that my good friend, Dorothy Maxwell, left this life after battling cervical cancer which was then followed by an untreatable, aggressive colon cancer.
For a week we have worried about every possible scenario after learning that a large mass was found behind R's breastbone and that there were many tumors in his lung . Today we learn that there's alot of hope in this journey R. will be taking.
I will be updating this blog as we take this journey. We thank all of you who are remembering R, J. and us in your prayers. This is the latest update from his wife, J. This is such hopeful, encouraging news for us:
Hi family!
So. We had two appointments today, one with the surgeon and one with our oncologist. Both of them are exceptionally excellent so far. Due to other life adventures, I have some skillz for dealing with and assessing doctors. I guess sometimes you get to use skills you didn't ever really want to have. Our oncologist has Harvard and Stanford and UW medical residency (nationally the most competitive residency) on his resume, and -- most important and impressive -- he seems to have the real life skills to match. He's positive we can win.
Here's some news.
1) We got results back from the bloodwork done on Wednesday. R's HCG counts (yes, HCG) are 125,000 (normal levels are something like 10). That indicates, almost certainly, germ-cell cancer. That's a treatable cancer!
2) We don't know what kind of germ-cell cancer it is. On Monday R. is getting an ultrasound to determine if it's gonadal germ cell (really treatable) and a surgical biopsy is Tuesday to confirm whether or not it's seminomal germ cell (also very treatable). Not as treatable -- but still treatable! -- is non-seminomal germ cell.
3) One indicator for R having gonadal cancer is the pattern of the metastasized tumors in his lungs. One indicator for it being seminomal is that his HCG levels are very high but his AFP levels are not. No particular indicators of non-seminomal cancer (but nothing to rule it out).
4) R starts chemotherapy on the 16th. We will be at Swedish. I get to stay overnight with him (they encourage and accommodate that, but I was ready to advocate if they didn't :) Swedish is arguably the best hospital in the city, and Seattle is a *great* city for medicine.
We are major having lightning and thunderstorms today. Seattle rarely gets storms. It's very auspicious!
So. We had two appointments today, one with the surgeon and one with our oncologist. Both of them are exceptionally excellent so far. Due to other life adventures, I have some skillz for dealing with and assessing doctors. I guess sometimes you get to use skills you didn't ever really want to have. Our oncologist has Harvard and Stanford and UW medical residency (nationally the most competitive residency) on his resume, and -- most important and impressive -- he seems to have the real life skills to match. He's positive we can win.
Here's some news.
1) We got results back from the bloodwork done on Wednesday. R's HCG counts (yes, HCG) are 125,000 (normal levels are something like 10). That indicates, almost certainly, germ-cell cancer. That's a treatable cancer!
2) We don't know what kind of germ-cell cancer it is. On Monday R. is getting an ultrasound to determine if it's gonadal germ cell (really treatable) and a surgical biopsy is Tuesday to confirm whether or not it's seminomal germ cell (also very treatable). Not as treatable -- but still treatable! -- is non-seminomal germ cell.
3) One indicator for R having gonadal cancer is the pattern of the metastasized tumors in his lungs. One indicator for it being seminomal is that his HCG levels are very high but his AFP levels are not. No particular indicators of non-seminomal cancer (but nothing to rule it out).
4) R starts chemotherapy on the 16th. We will be at Swedish. I get to stay overnight with him (they encourage and accommodate that, but I was ready to advocate if they didn't :) Swedish is arguably the best hospital in the city, and Seattle is a *great* city for medicine.
We are major having lightning and thunderstorms today. Seattle rarely gets storms. It's very auspicious!
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