Sarcomatoid
Comments
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Yes, very sweetangec said:Ok, now I am in tears! That
Ok, now I am in tears! That was very sweet! Let's all keep our prayers going and pray that TW is going to get the treatment that will help him. I know it is out there!
But then we've got a very nice bunch of folks here, haven't we? Maybe some poor folks are wrecked by problems like cancer but those who show up here are generally rendered more, rather than less, human by the chastening experience of facing their own mortality.
I've come back from a fascinating day in our High Court in Edinburgh to find a letter advising an appointment in a renal oncology clinic tomorrow week when I guess we'll review possible options. Even with a rare form of RCC there will be some palliative possibilities so I'll doubtless soon be engaging in dialogues with others in roughly similar situations.
Thanks for the pep talks, my fellow warriors.0 -
Oncologist reviewBruce1955 said:Oncologist
Apparently the oncologist at the local VA Hospital doesn't understand Sarcomatoid. He treatment options are " lets wait and see in 6 months" and do a localized CT then. I've made plans to see aa Oncologist in Richmond,Va's VA Hospital where I had my surgery done.
I'm a little frustrated, maybe because they almost wrote me off and didn't do the surgery, thinking it was so large and too advanced. But I'm not giving up.
Well I finally got to see another Oncologist. My tumor was a stage 2, grade 4, completely sarcomatoid. I've been told that there will be no further surgeries should another tumor should show itself. Any further treatment will be done with chemo, etc.
The CT Scan showed that I have a cysts on my remaining kidney and one is hyperdense, but to small to biopsy.
I'm in mild kidney failure. The Dr's believe that that will get better over time. The body getting use to only one kidney now.
Another CT scan in 3 to 4 months.
Thanks for the ear.
Merry Christmas!0 -
So far so good Bruce!Bruce1955 said:Oncologist review
Well I finally got to see another Oncologist. My tumor was a stage 2, grade 4, completely sarcomatoid. I've been told that there will be no further surgeries should another tumor should show itself. Any further treatment will be done with chemo, etc.
The CT Scan showed that I have a cysts on my remaining kidney and one is hyperdense, but to small to biopsy.
I'm in mild kidney failure. The Dr's believe that that will get better over time. The body getting use to only one kidney now.
Another CT scan in 3 to 4 months.
Thanks for the ear.
Merry Christmas!
So far so good Bruce! Sounds like you can relax a bit. Please keep us updated and enjoy the rest if the year!0 -
So far so good Bruce!Bruce1955 said:Oncologist review
Well I finally got to see another Oncologist. My tumor was a stage 2, grade 4, completely sarcomatoid. I've been told that there will be no further surgeries should another tumor should show itself. Any further treatment will be done with chemo, etc.
The CT Scan showed that I have a cysts on my remaining kidney and one is hyperdense, but to small to biopsy.
I'm in mild kidney failure. The Dr's believe that that will get better over time. The body getting use to only one kidney now.
Another CT scan in 3 to 4 months.
Thanks for the ear.
Merry Christmas!
So far so good Bruce! Sounds like you can relax a bit. Please keep us updated and enjoy the rest if the year!0 -
Good for you, hanging in there Jeff and getting that second opinion. Did they tell you your eGFR measure of kidney function? You and I are in the same boat of no more surgery.Jeff2159 said:Things are Looking Up
Completed my bucket list items of playing Pebble Beach and going on a 11 day cruise to the Baltic Sea but in the mean time had to stop the sutent for the second time after 23 days as it was ripping up the previous surgical site in my mouth. The skin graft from June 20 just dissolved and I have a gash in my mouth again which is painful but tolerable but makes eating food challenging. The good news is from my CT Scan from thurs and my ONC says I can stay off Sutent for as long as I need to get my mouth to heal (and as long as I continue to get good scan results). Will get the full info tomorrow but he wanted to give me the early good news. Sutent and the power of prayer have sure worked for me
Jeff
We'll both need close continuing surveillance and I suppose that goes for most on this thread.
Any news to be had from Nancy, Rae, David, John, Jeff .... ? Wishing everyone well, or, at least, better! TW0 -
No news is good newsTexas_wedge said:Good for you, hanging in there Jeff and getting that second opinion. Did they tell you your eGFR measure of kidney function? You and I are in the same boat of no more surgery.
We'll both need close continuing surveillance and I suppose that goes for most on this thread.
Any news to be had from Nancy, Rae, David, John, Jeff .... ? Wishing everyone well, or, at least, better! TW
So far, so good here. I joined a gym and have been working on getting my stamina back. Breathing has improved. Pain has not but increasing ab strength has been good. I'm here reading and praying for all almost daily. Just have my hands full with my mom who is not expected to live much longer, though she's been proving them wrong for some time now. I think of you all often and wish everyone a blessed holiday season0 -
Good newsrae_rae said:No news is good news
So far, so good here. I joined a gym and have been working on getting my stamina back. Breathing has improved. Pain has not but increasing ab strength has been good. I'm here reading and praying for all almost daily. Just have my hands full with my mom who is not expected to live much longer, though she's been proving them wrong for some time now. I think of you all often and wish everyone a blessed holiday season
Thanks for the reassurance that you're doing well, Rae, and I hope your Mom keeps on defying the odds.0 -
Just waiting to see.Texas_wedge said:Good news
Thanks for the reassurance that you're doing well, Rae, and I hope your Mom keeps on defying the odds.
I am doing good I guess. I am waiting to get my scan on the 9th and the results on the 12th. Then we will know if the IL2 worked. It has been a long wait. I had my last treatment on 10/7/12. I am starting to get the cancer crazy's. Wondering about every little pain. Lately I have had some small pains in my back. They worry me the most. Hopefully all will be good news on the 12th. Just wish it was here. Best wishes for good health to everyone. Will let you know after the 12th.
Nancy0 -
UpdateNanaLou said:Just waiting to see.
I am doing good I guess. I am waiting to get my scan on the 9th and the results on the 12th. Then we will know if the IL2 worked. It has been a long wait. I had my last treatment on 10/7/12. I am starting to get the cancer crazy's. Wondering about every little pain. Lately I have had some small pains in my back. They worry me the most. Hopefully all will be good news on the 12th. Just wish it was here. Best wishes for good health to everyone. Will let you know after the 12th.
Nancy
I'm doing well too. I actually feel better than I have in a LONG time. I have my 2nd post-op CT scan on December 20th. I've been okay about it until recently. Now that it's December, those pre-scan jitters are creeping in.
I also have my 1st anniversary of my surgery next Thursday, December 6th. I plan to celebrate with a long bike ride.
It's really good to hear from everyone!
Take care, David0 -
Bone ScanBruce1955 said:Oncologist review
Well I finally got to see another Oncologist. My tumor was a stage 2, grade 4, completely sarcomatoid. I've been told that there will be no further surgeries should another tumor should show itself. Any further treatment will be done with chemo, etc.
The CT Scan showed that I have a cysts on my remaining kidney and one is hyperdense, but to small to biopsy.
I'm in mild kidney failure. The Dr's believe that that will get better over time. The body getting use to only one kidney now.
Another CT scan in 3 to 4 months.
Thanks for the ear.
Merry Christmas!
Had a bone scan done before my last Oncologist visit but just got the results. I have a spot on my rib. Going for another CT and X-Ray for confirmation.
My wife is going out of her mind, cuz our daughter may have Lymphoma. Her biopsy scheduled for the 26th Dec. 10 days for confirmation.0 -
Bone scanBruce1955 said:Bone Scan
Had a bone scan done before my last Oncologist visit but just got the results. I have a spot on my rib. Going for another CT and X-Ray for confirmation.
My wife is going out of her mind, cuz our daughter may have Lymphoma. Her biopsy scheduled for the 26th Dec. 10 days for confirmation.
That's very tough luck Bruce. Praying that it turns out not to be lymphoma and that there is an easy cure for your rib met.0 -
Bone scan & lymphoma scareTexas_wedge said:Bone scan
That's very tough luck Bruce. Praying that it turns out not to be lymphoma and that there is an easy cure for your rib met.
I'm praying for your family, Bruce. Hugs to you all.0 -
Bone Scan NewsBruce1955 said:Bone Scan
Had a bone scan done before my last Oncologist visit but just got the results. I have a spot on my rib. Going for another CT and X-Ray for confirmation.
My wife is going out of her mind, cuz our daughter may have Lymphoma. Her biopsy scheduled for the 26th Dec. 10 days for confirmation.
Hi Bruce,
Just wanted you to know I'm thinking about you, your daughter and your wife and wishing you the best.
--David0 -
Bone ScanBruce1955 said:Bone Scan
Had a bone scan done before my last Oncologist visit but just got the results. I have a spot on my rib. Going for another CT and X-Ray for confirmation.
My wife is going out of her mind, cuz our daughter may have Lymphoma. Her biopsy scheduled for the 26th Dec. 10 days for confirmation.
Thank you all for your prayers and emotional support. I know I was an emotional wreak when I first found out that I had cancer. I couldn't talk about it with anyone except my wife at first.
I'm worried about our daughter's emotional state. She doesn't live with us, but does live close by, but she lives alone. She knows we're here for her day & night.
My wife is a 49yr old full time college student, getting ready to start her final semester after Christmas. I fear she will take a break and never finish, should our daughter's prognosis be positive.
Thanks for letting me get this off my chest.
Hope everyone to become CANCER FREE!0 -
Bone scan etcBruce1955 said:Bone Scan
Thank you all for your prayers and emotional support. I know I was an emotional wreak when I first found out that I had cancer. I couldn't talk about it with anyone except my wife at first.
I'm worried about our daughter's emotional state. She doesn't live with us, but does live close by, but she lives alone. She knows we're here for her day & night.
My wife is a 49yr old full time college student, getting ready to start her final semester after Christmas. I fear she will take a break and never finish, should our daughter's prognosis be positive.
Thanks for letting me get this off my chest.
Hope everyone to become CANCER FREE!
Keep us posted Bruce, about all three of you and we'll keep praying for good outcomes for you all.0 -
One Sarcomatoid Story
Dear Survivors,
I am convinced all cancers, like all of us, are different and that each of our stories is unique, but the inspirational (not to mention informational) benefit we receive from sharing our experiences is indisputable. To review, I was diagnosed with a "pygmy shrew" (Thanks, Tex) of a tumor in July of 2011---1.8 CM clear cell, but grade 4 due to it being 50% sarcomatoid. Successful open partial nephrectomy on August 16, 2011 was followed by more or less three month CT scans for the last 18 months. Friday's result, like the others, showed no evidence of disease and needless to say I am feeling much relieved. We will go to six month checks from now on and the next one will be with an ultrasound since my doctor is now more concerned that the risk of overexposure to CT scans is greater than the risk of getting less than optimal information from the ultrasound. (We will go back to a CT scan in a year.) I know most of you with sarcomatoid de-differentiation have a higher stage than I did on initial diagnosis, but I think it is still encouraging that, in this case, a tumor with 50% sarcomatoid features has not resulted in any spread or re-occurance for 18 months. Perhaps sarcomatoid de-differentiation is more associative than causal in understanding spread or reoccurance, like having red hair, instead of brown, and should not be as alarming a characteristic as most think. In any case, I just wanted to add my unusual experience to the wealth of information you all have provided here and to thank everyone for your inspiration and information.
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Sarcomatoiddjc2 said:One Sarcomatoid Story
Dear Survivors,
I am convinced all cancers, like all of us, are different and that each of our stories is unique, but the inspirational (not to mention informational) benefit we receive from sharing our experiences is indisputable. To review, I was diagnosed with a "pygmy shrew" (Thanks, Tex) of a tumor in July of 2011---1.8 CM clear cell, but grade 4 due to it being 50% sarcomatoid. Successful open partial nephrectomy on August 16, 2011 was followed by more or less three month CT scans for the last 18 months. Friday's result, like the others, showed no evidence of disease and needless to say I am feeling much relieved. We will go to six month checks from now on and the next one will be with an ultrasound since my doctor is now more concerned that the risk of overexposure to CT scans is greater than the risk of getting less than optimal information from the ultrasound. (We will go back to a CT scan in a year.) I know most of you with sarcomatoid de-differentiation have a higher stage than I did on initial diagnosis, but I think it is still encouraging that, in this case, a tumor with 50% sarcomatoid features has not resulted in any spread or re-occurance for 18 months. Perhaps sarcomatoid de-differentiation is more associative than causal in understanding spread or reoccurance, like having red hair, instead of brown, and should not be as alarming a characteristic as most think. In any case, I just wanted to add my unusual experience to the wealth of information you all have provided here and to thank everyone for your inspiration and information.
That's a great share and good news for anyone familiar with sarcomatoid to any degree. Really happy for you. We never get enough of this good news stuff!!!
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UpdateDMike said:Update
I'm doing well too. I actually feel better than I have in a LONG time. I have my 2nd post-op CT scan on December 20th. I've been okay about it until recently. Now that it's December, those pre-scan jitters are creeping in.
I also have my 1st anniversary of my surgery next Thursday, December 6th. I plan to celebrate with a long bike ride.
It's really good to hear from everyone!
Take care, DavidHi David,
If I've missed recent posts, my bad. But I've been hoping to read about your last Dr. visit. Everything okay? Any plans for next step? Anxious to hear!
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Sarcomatoid and treatmentsalice124 said:Sarcomatoid
That's a great share and good news for anyone familiar with sarcomatoid to any degree. Really happy for you. We never get enough of this good news stuff!!!
Some more good news stuff. You may think it's not, because the figures may look depressing, but I'll deal with that preception in a moment. The good news is that it has been thought, until very recently, that having sRCC is unalloyed bad news, with a dismal prognosis and no treatment likely to be of much use, other than the old, untargeted cytotoxics, with their nasty cardiac and other SEs.
This paper (link to the Abstract is below) shows that even the oldset TKI (Nexavar - sorafenib) improves the prognosis for sRCC and both Sutent (sunitinib) and Votrient (pazopanib) look like doing the same and probably appreciably better, especially when the dosage level, titration, cycle length and chronology of administration are further fine-tuned.
I expected (and, of course, hoped for) this finding. The hypothesis favouring the old chemos was that they attack rapidly proliferating cells and sRCC histology is one in which the aggression involves a high mitotic rate. However, that histology also features a need for rapid angiogenesis to feed the tumor. The aggression of sRCC is so great that the cell multiplication outstrips the angiogenesis it needs so that the centre of the tumor becomes necrotic (that is, it dies) but the outside, close to the developing blood supply, continues to thrive. By attacking the source of blood supply to the tumor, those new targeted therapies that are designed to halt angiogenesis will hit that thriving peripheral part of the tumor so that, with luck the entire tumor will be killed off. The early signs are that this is happening.
Outcomes of patients with sarcomatoid renal cell carcinoma: The Mayo Clinic experience.
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=134&abstractID=106327
For those who can only see the less attractive figures quoted, I'd say that if you've done any investigation into sRCC, which you probably have, you'd already be familiar with the unattractive prognosis anyway. So, the newly recognised discovery of the effectiveness of the TKIs should come as good news.
Add to this people like John who is doing very well on Votrient + nivolumab and others who are faring similarly on Sutent + nivolumab and it looks better still. Then consider ground-breakers like Nancy for whom HD IL2 is yielding good results and the news is better yet.
Above all, keep constantly in mind the recognition that all of the studies, even the most recent, are based on historic data and remember that great manifesto statement of Donna Lee's (can't believe Donna has joined those of us in our 8th decade!) - which rings forever in my ears:
"When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago."
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When I saw that abstract, I realized there is possibilityTexas_wedge said:Sarcomatoid and treatments
Some more good news stuff. You may think it's not, because the figures may look depressing, but I'll deal with that preception in a moment. The good news is that it has been thought, until very recently, that having sRCC is unalloyed bad news, with a dismal prognosis and no treatment likely to be of much use, other than the old, untargeted cytotoxics, with their nasty cardiac and other SEs.
This paper (link to the Abstract is below) shows that even the oldset TKI (Nexavar - sorafenib) improves the prognosis for sRCC and both Sutent (sunitinib) and Votrient (pazopanib) look like doing the same and probably appreciably better, especially when the dosage level, titration, cycle length and chronology of administration are further fine-tuned.
I expected (and, of course, hoped for) this finding. The hypothesis favouring the old chemos was that they attack rapidly proliferating cells and sRCC histology is one in which the aggression involves a high mitotic rate. However, that histology also features a need for rapid angiogenesis to feed the tumor. The aggression of sRCC is so great that the cell multiplication outstrips the angiogenesis it needs so that the centre of the tumor becomes necrotic (that is, it dies) but the outside, close to the developing blood supply, continues to thrive. By attacking the source of blood supply to the tumor, those new targeted therapies that are designed to halt angiogenesis will hit that thriving peripheral part of the tumor so that, with luck the entire tumor will be killed off. The early signs are that this is happening.
Outcomes of patients with sarcomatoid renal cell carcinoma: The Mayo Clinic experience.
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=134&abstractID=106327
For those who can only see the less attractive figures quoted, I'd say that if you've done any investigation into sRCC, which you probably have, you'd already be familiar with the unattractive prognosis anyway. So, the newly recognised discovery of the effectiveness of the TKIs should come as good news.
Add to this people like John who is doing very well on Votrient + nivolumab and others who are faring similarly on Sutent + nivolumab and it looks better still. Then consider ground-breakers like Nancy for whom HD IL2 is yielding good results and the news is better yet.
Above all, keep constantly in mind the recognition that all of the studies, even the most recent, are based on historic data and remember that great manifesto statement of Donna Lee's (can't believe Donna has joined those of us in our 8th decade!) - which rings forever in my ears:
"When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago."
The long term numbers are bleak. But, they are finding treatments. That is encouraging. Personally, I am at the find a met, cut it out stage.
As for statistics, I am approaching my 1 year cancerversy. At that point, I exceed the median for Sarcomitoid features. I plan to be an outlier at first, but hopefully, a typicial patient in the end....
Did I mention I hate cancer...
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