Now It's the Liver

ejn58

I completed the 5Fu/Mitomyicin in Feb. 10 and scans in May showed spots on the liver. Had a PET and MRI and the results were inconclusive. Had another CT in July and no change. CT in December shows lymph node near the original tumor site in the rectum. EUS confirms cancer in the lymph node. PET scan also shows activity in the liver and a lymph node in that region. Original tumor site and rectal wall are clear. I have been feeling great with alot of thanks to this board so this comes as quite a surprise.

Additional Onc and Surgeon appts in the coming weeks with indication of Cisplatin and Xeloda. I've seen other posts regarding liver that mention Carboplatin and Paclitaxel. Since spread and recurrence seem to be rare any others that have had similar and can provide information will be helpful.

Thanks.

z

ejn58
I hope your visits with the onc and surg will give you the additional information you will need to get rid of these liver spots. I know of 2 other posters that have mets to the liver and have been succesfully treated. I know of another 2 posters of which 1 had been treated successfully with chemo and another poster who is still being treated with the same regimen as the prior poster and is having good results. Hopefully they will chime in. Lori

Here are 2 posts from winnie who was successfully treated for liver mets:

4-25-10

Hi all, I am new here but an old hand on the Rare Cancer Alliance anal cancer forum.

I am interested to know what states my fellow patients live in. It seems to me like there are very serious few cases out west, where I live (SoCal).

If you are willing to chime in with your general location, I'd love to know. I am NOT a stalker MP327 can vouch for me..I think.

I was initially treated by an onc in private practice, who knew my parents. He chose a brilliant, effective alternative chemo after doing some EXTRA research looking for something new for liver mets from SCC, and it was the right one for my liver mets: Carbo, Taxol, and Xeloda. But his office was understaffed and it was at times very hard to even schedule a chemo!

I transferred to City of Hope in Duarte, a major, well funded center. The care was so well coordinated that it was astonishing! But they were shocked and mystified at my San Diego guy's choice. They had to acknowledge though that he fixed my liver and it's stayed fixed for almost two years now. But I could tell they'd have given me conventional treatment had I gone to them first.

Curious also as to whose been to the biggies like MDA, Sloan-Kettering, etc.

Winnie

‹ CAT Scan results First Use of Port after surgery to place it - YIKES ›

5-12-10

Gang, I have a great letter for you to read. I'd written to Dr. Cummings in 2009 to tell him that a certain drug combo, carbo-taxol-xeloda seems to have cleaned out my liver. I did need the APR in the end, but who cares, my liver is still good.

PLEASE POST TO ANY SQUAMOUS CELL CANCER SITES LIKE THIS ONE. I also can be a resource (volunteer, self-taught) on the topic of my particular treatment. Please save this post even if you are doing fine now. `

From Dr. Cummings to me in 2009

Dear Ms Collins,

Thank you very much for this information. I am heartened to hear of your response to treatment. I shall add this management plan to my files – I have been surprised by how many patients and physicians have sent me information about successful treatment of metastatic anal cancer as a result of the editorial I wrote. The newer drugs, taxanes (for example, Paclitaxel) and platinum-analogues (for example, Carboplatin) have figured in several of these protocols and do suggest a way forward in this disease.

Once again, thank you. I wish you all the best for the future.

Yours sincerely,

Bernard Cummings

Professor, Department of Radiation Oncology,

Princess Margaret Hospital/University of Toronto .

‹ Home from the hospital Intro New Member ›

mp327

Treatment for Liver Mets
I am the "mp327" that Winnie referred to in her posts about the treatment she received for liver mets and I will vouch that she is a success story! Her treatment of Carbo, Taxol and Xeloda seems to have cleared her liver of any tumors. I would suggest googling the two following doctors and have your doctor do some research on them or contact them, as they are responsible for Winnie's successful treatment: Dr. William Stanton (California) and Dr. J.D. Hainsworth (Tennessee). If you can't find them, let me know and I'll get you more information.

azkookie18

mp327 said:

Treatment for Liver Mets
I am the "mp327" that Winnie referred to in her posts about the treatment she received for liver mets and I will vouch that she is a success story! Her treatment of Carbo, Taxol and Xeloda seems to have cleared her liver of any tumors. I would suggest googling the two following doctors and have your doctor do some research on them or contact them, as they are responsible for Winnie's successful treatment: Dr. William Stanton (California) and Dr. J.D. Hainsworth (Tennessee). If you can't find them, let me know and I'll get you more information.

Dr. Hainsworth?
Hi, do you by chance have any info on the study from Dr. Hainsworth? I also curious in contacting him to see if he'd be interested in hearing stories of those who have gone thru similar "cocktails".

My mom is on a similar "cocktail" for her liver mets (cisplatin/taxol) and the results thus far, have been good. As I'd mentioned in other posts, as of her last scan about 2 months ago, her mets have shrunk to about 10% of original size and the one in the abdominal wall was no longer visible on the scan. Those results were after 8 chemo/radiation treatments (this was her doc's initial recipe since at time of diagnosis, she had mets..We don't yet know if the primary site is completely clear as she is also going to be undergoing the exam after last round of chemo is done.

Since she's had positive response from the initial hit at it, doc wanted to remain aggressive and she's had 3 rounds scheduled(1 round= 3 weeks on/1 week off).
She has 1 more round left so in 3 weeks, we'll have another scan and till then, hard prayer time and we'll determine what the next steps will be.

I share this detail as there aren't many cases with mets. I frequent this and other forum to learn about "what's normal" with this disease and it has relieved some freakout so I figured I'd share her story thus far as well.
For that, I thank you all for sharing your stories.

All the best to you in your fight against this ugly beast.

mp327

azkookie18 said:

Dr. Hainsworth?
Hi, do you by chance have any info on the study from Dr. Hainsworth? I also curious in contacting him to see if he'd be interested in hearing stories of those who have gone thru similar "cocktails".

My mom is on a similar "cocktail" for her liver mets (cisplatin/taxol) and the results thus far, have been good. As I'd mentioned in other posts, as of her last scan about 2 months ago, her mets have shrunk to about 10% of original size and the one in the abdominal wall was no longer visible on the scan. Those results were after 8 chemo/radiation treatments (this was her doc's initial recipe since at time of diagnosis, she had mets..We don't yet know if the primary site is completely clear as she is also going to be undergoing the exam after last round of chemo is done.

Since she's had positive response from the initial hit at it, doc wanted to remain aggressive and she's had 3 rounds scheduled(1 round= 3 weeks on/1 week off).
She has 1 more round left so in 3 weeks, we'll have another scan and till then, hard prayer time and we'll determine what the next steps will be.

I share this detail as there aren't many cases with mets. I frequent this and other forum to learn about "what's normal" with this disease and it has relieved some freakout so I figured I'd share her story thus far as well.
For that, I thank you all for sharing your stories.

All the best to you in your fight against this ugly beast.

Dr. Hainsworth
I'm glad to hear that your mother is seeing some good results from this chemo combo. To answer your question, I haven't looked for any info on Dr. Hainsworth's study, but there are plenty of sites that come up on google with his name on them, so perhaps there's some info that can be accessed. He is in Nashville and I'm sure you could easily find out how to contact him. You might have better luck getting in touch with him through your mom's physician. Please let all of us know what you find out. When I have more time, I will try to do some research and see if I can come up with any info about his study.

SueRelays

azkookie18 said:

Dr. Hainsworth?
Hi, do you by chance have any info on the study from Dr. Hainsworth? I also curious in contacting him to see if he'd be interested in hearing stories of those who have gone thru similar "cocktails".

My mom is on a similar "cocktail" for her liver mets (cisplatin/taxol) and the results thus far, have been good. As I'd mentioned in other posts, as of her last scan about 2 months ago, her mets have shrunk to about 10% of original size and the one in the abdominal wall was no longer visible on the scan. Those results were after 8 chemo/radiation treatments (this was her doc's initial recipe since at time of diagnosis, she had mets..We don't yet know if the primary site is completely clear as she is also going to be undergoing the exam after last round of chemo is done.

Since she's had positive response from the initial hit at it, doc wanted to remain aggressive and she's had 3 rounds scheduled(1 round= 3 weeks on/1 week off).
She has 1 more round left so in 3 weeks, we'll have another scan and till then, hard prayer time and we'll determine what the next steps will be.

I share this detail as there aren't many cases with mets. I frequent this and other forum to learn about "what's normal" with this disease and it has relieved some freakout so I figured I'd share her story thus far as well.
For that, I thank you all for sharing your stories.

All the best to you in your fight against this ugly beast.

Interesting info....as
Interesting info....as always.
I had a liver resect in February 2010. Surgeon said he could remove all the cancer through surgery with no need for chemo....so since I'd already done the chemo/rad for anal cancer, I was quick to opt for surgery.


Wishing you ALL well!!!

tpmack37

z said:

ejn58
I hope your visits with the onc and surg will give you the additional information you will need to get rid of these liver spots. I know of 2 other posters that have mets to the liver and have been succesfully treated. I know of another 2 posters of which 1 had been treated successfully with chemo and another poster who is still being treated with the same regimen as the prior poster and is having good results. Hopefully they will chime in. Lori

Here are 2 posts from winnie who was successfully treated for liver mets:

4-25-10

Hi all, I am new here but an old hand on the Rare Cancer Alliance anal cancer forum.

I am interested to know what states my fellow patients live in. It seems to me like there are very serious few cases out west, where I live (SoCal).

If you are willing to chime in with your general location, I'd love to know. I am NOT a stalker MP327 can vouch for me..I think.

I was initially treated by an onc in private practice, who knew my parents. He chose a brilliant, effective alternative chemo after doing some EXTRA research looking for something new for liver mets from SCC, and it was the right one for my liver mets: Carbo, Taxol, and Xeloda. But his office was understaffed and it was at times very hard to even schedule a chemo!

I transferred to City of Hope in Duarte, a major, well funded center. The care was so well coordinated that it was astonishing! But they were shocked and mystified at my San Diego guy's choice. They had to acknowledge though that he fixed my liver and it's stayed fixed for almost two years now. But I could tell they'd have given me conventional treatment had I gone to them first.

Curious also as to whose been to the biggies like MDA, Sloan-Kettering, etc.

Winnie

‹ CAT Scan results First Use of Port after surgery to place it - YIKES ›

5-12-10

Gang, I have a great letter for you to read. I'd written to Dr. Cummings in 2009 to tell him that a certain drug combo, carbo-taxol-xeloda seems to have cleaned out my liver. I did need the APR in the end, but who cares, my liver is still good.

PLEASE POST TO ANY SQUAMOUS CELL CANCER SITES LIKE THIS ONE. I also can be a resource (volunteer, self-taught) on the topic of my particular treatment. Please save this post even if you are doing fine now. `

From Dr. Cummings to me in 2009

Dear Ms Collins,

Thank you very much for this information. I am heartened to hear of your response to treatment. I shall add this management plan to my files – I have been surprised by how many patients and physicians have sent me information about successful treatment of metastatic anal cancer as a result of the editorial I wrote. The newer drugs, taxanes (for example, Paclitaxel) and platinum-analogues (for example, Carboplatin) have figured in several of these protocols and do suggest a way forward in this disease.

Once again, thank you. I wish you all the best for the future.

Yours sincerely,

Bernard Cummings

Professor, Department of Radiation Oncology,

Princess Margaret Hospital/University of Toronto .

‹ Home from the hospital Intro New Member ›

Liver mets
Hello - my name is Tim and I'm fighting the Liver mets. I was diagnosed with Anal cancer in Feb 2010 and a few days later they saw my cat scan and called me back in. Liver was in terrible shape - not a few tumors, but more like spotted like a leopard. After the 5-FU + Mytomycin and 6 weeks of radiation, I continued those 2 chemos throughout the Summer. All the while telling my doc about Winnie's story and the mixture she used. I switched to that in August and am going for one more before getting another scan for a total of 8 Carboplatin/Taxol cocktails. There has been some really positive results in the way of shrinking the tumors down. I asked my doc this week if they have shrunk enough that maybe they could be treated another way, eg: radio frequency ablation. She not only said YES that may be possible, she also added the possibility of the Gamma-Knife treatment. (I was never a candidate for those because 1) so many tumors and 2) too large - now, it may be a possibility. Another possibility is that maybe the liver tumors are dead already, which happened to Winnie.
Stay strong! Keep looking for a way to survive.
TIM

alis7910

mp327 said:

Dr. Hainsworth
I'm glad to hear that your mother is seeing some good results from this chemo combo. To answer your question, I haven't looked for any info on Dr. Hainsworth's study, but there are plenty of sites that come up on google with his name on them, so perhaps there's some info that can be accessed. He is in Nashville and I'm sure you could easily find out how to contact him. You might have better luck getting in touch with him through your mom's physician. Please let all of us know what you find out. When I have more time, I will try to do some research and see if I can come up with any info about his study.

Dr. Hainsworth
Hi:
just want to know if you ae a nurse; I have been reading your posts for a long time and have
come to that diagnosis.
i am grateful for all that you do for this site

mp327

alis7910 said:

Dr. Hainsworth
Hi:
just want to know if you ae a nurse; I have been reading your posts for a long time and have
come to that diagnosis.
i am grateful for all that you do for this site

Hi alis
I'm not sure who you were directing your question to about being a nurse. If it's me, no, I'm not a nurse, just another anal cancer survivor who has learned so very much from other survivors and happy to pass along any info that's helpful.

lacer00

Hi
I'm also fighting 2 spots on my liver. I was diagnoised with Anal Canal Carsinoma June 2009. After 6 weeks of 5FU and mitomycin and radiation, the original area was cancer free. in 6 months 3 spots appeared on my lungs and a spot on my liver. They started more chemo combo of 5FU and cicplatin. I have had 4 rounds and the lungs seem to be clear but the liver still has one spot and a shadow which may be a second spot. I will find more out Monday Feb 7 as I go in for results of my CT Scan and start round 5. I am interested in the different treatments and will talk to my doctor if the liver doesn't seem to be responding.

lacer00

z said:

ejn58
I hope your visits with the onc and surg will give you the additional information you will need to get rid of these liver spots. I know of 2 other posters that have mets to the liver and have been succesfully treated. I know of another 2 posters of which 1 had been treated successfully with chemo and another poster who is still being treated with the same regimen as the prior poster and is having good results. Hopefully they will chime in. Lori

Here are 2 posts from winnie who was successfully treated for liver mets:

4-25-10

Hi all, I am new here but an old hand on the Rare Cancer Alliance anal cancer forum.

I am interested to know what states my fellow patients live in. It seems to me like there are very serious few cases out west, where I live (SoCal).

If you are willing to chime in with your general location, I'd love to know. I am NOT a stalker MP327 can vouch for me..I think.

I was initially treated by an onc in private practice, who knew my parents. He chose a brilliant, effective alternative chemo after doing some EXTRA research looking for something new for liver mets from SCC, and it was the right one for my liver mets: Carbo, Taxol, and Xeloda. But his office was understaffed and it was at times very hard to even schedule a chemo!

I transferred to City of Hope in Duarte, a major, well funded center. The care was so well coordinated that it was astonishing! But they were shocked and mystified at my San Diego guy's choice. They had to acknowledge though that he fixed my liver and it's stayed fixed for almost two years now. But I could tell they'd have given me conventional treatment had I gone to them first.

Curious also as to whose been to the biggies like MDA, Sloan-Kettering, etc.

Winnie

‹ CAT Scan results First Use of Port after surgery to place it - YIKES ›

5-12-10

Gang, I have a great letter for you to read. I'd written to Dr. Cummings in 2009 to tell him that a certain drug combo, carbo-taxol-xeloda seems to have cleaned out my liver. I did need the APR in the end, but who cares, my liver is still good.

PLEASE POST TO ANY SQUAMOUS CELL CANCER SITES LIKE THIS ONE. I also can be a resource (volunteer, self-taught) on the topic of my particular treatment. Please save this post even if you are doing fine now. `

From Dr. Cummings to me in 2009

Dear Ms Collins,

Thank you very much for this information. I am heartened to hear of your response to treatment. I shall add this management plan to my files – I have been surprised by how many patients and physicians have sent me information about successful treatment of metastatic anal cancer as a result of the editorial I wrote. The newer drugs, taxanes (for example, Paclitaxel) and platinum-analogues (for example, Carboplatin) have figured in several of these protocols and do suggest a way forward in this disease.

Once again, thank you. I wish you all the best for the future.

Yours sincerely,

Bernard Cummings

Professor, Department of Radiation Oncology,

Princess Margaret Hospital/University of Toronto .

‹ Home from the hospital Intro New Member ›

HI
I am interested in this new drug combo. What are the side effects? I am getting ready for my 5th round of 5FU/Cisplatin and will find out Monday how my liver is reacting. I was diagnosed June 2009 with Stage IIIB Anal Canal Carcinoma, went through treatment and was clear for a few months then it metastasized in my lung and liver. There was one spot on my liver and then the last CT Scan showed a possible 2nd spot forming. I am still working full time and this treatment is not to bad. If the new scan shows no or little improvement I want to be prepared with some alternatives. Thank you for your help

Deborah

mp327

lacer00 said:

HI
I am interested in this new drug combo. What are the side effects? I am getting ready for my 5th round of 5FU/Cisplatin and will find out Monday how my liver is reacting. I was diagnosed June 2009 with Stage IIIB Anal Canal Carcinoma, went through treatment and was clear for a few months then it metastasized in my lung and liver. There was one spot on my liver and then the last CT Scan showed a possible 2nd spot forming. I am still working full time and this treatment is not to bad. If the new scan shows no or little improvement I want to be prepared with some alternatives. Thank you for your help

Deborah

Hi lacer00
The treatment for liver mets discussed on this thread is carbo/taxol/xeloda. However, I think the person who received the xeloda in addition to the other two drugs had a rectal tumor, in addition to previous anal cancer and the liver mets. I recommend having your doctor seek out information on Dr. Hainsworth's study, as mentioned here.

lacer00

mp327 said:

Hi lacer00
The treatment for liver mets discussed on this thread is carbo/taxol/xeloda. However, I think the person who received the xeloda in addition to the other two drugs had a rectal tumor, in addition to previous anal cancer and the liver mets. I recommend having your doctor seek out information on Dr. Hainsworth's study, as mentioned here.

Thank you
I will copy down every thing and take to appointment Monday and see what will happen next. hopefully the liver will have responded well to the treatment I am doing and nothing will change but if not I will have suggestions ready.

lizdeli

lacer00 said:

Hi
I'm also fighting 2 spots on my liver. I was diagnoised with Anal Canal Carsinoma June 2009. After 6 weeks of 5FU and mitomycin and radiation, the original area was cancer free. in 6 months 3 spots appeared on my lungs and a spot on my liver. They started more chemo combo of 5FU and cicplatin. I have had 4 rounds and the lungs seem to be clear but the liver still has one spot and a shadow which may be a second spot. I will find more out Monday Feb 7 as I go in for results of my CT Scan and start round 5. I am interested in the different treatments and will talk to my doctor if the liver doesn't seem to be responding.

Cisplatin
I didn't have any mets, thankfully. I have 17 months post treatment. But I was treated iwth Cisplatin as well. I've heard of a few people with mets that have been treated with Cisplatin and makes me wonder if it was a good thing I received it just in case there was losse "b*****d" cancer cell floating arund the my liver or lungs.

Just thinking out loud here....
Liz

ejn58

lizdeli said:

Cisplatin
I didn't have any mets, thankfully. I have 17 months post treatment. But I was treated iwth Cisplatin as well. I've heard of a few people with mets that have been treated with Cisplatin and makes me wonder if it was a good thing I received it just in case there was losse "b*****d" cancer cell floating arund the my liver or lungs.

Just thinking out loud here....
Liz

I'll start round 2 of
I'll start round 2 of Cisplatin and Xeloda on Friday. So far ok. Good luck with the scans. I'll be at that point in April and hoping for the summer off at least. Thanks for the support from everyone, it's helped me a great deal. E.

lacer00

lacer00 said:

Hi
I'm also fighting 2 spots on my liver. I was diagnoised with Anal Canal Carsinoma June 2009. After 6 weeks of 5FU and mitomycin and radiation, the original area was cancer free. in 6 months 3 spots appeared on my lungs and a spot on my liver. They started more chemo combo of 5FU and cicplatin. I have had 4 rounds and the lungs seem to be clear but the liver still has one spot and a shadow which may be a second spot. I will find more out Monday Feb 7 as I go in for results of my CT Scan and start round 5. I am interested in the different treatments and will talk to my doctor if the liver doesn't seem to be responding.

Update
I went through 5 treatments of 5FU/cisplatin. They last one really did a lot of damage to my body. it effect my legs and hands with peripheral neuropathy. I was then sent to a intervential Radiology. He did a RFA thursday. He said that the two spots had grown but were still small enough to get. I am still recovering. one spot bleed so they gave me 2 units of blood. I hope that takes care of that problem. Funny the side effects you have that are not even connect to the problem. My arms were over my head to two hours and I am really having problems with them. The one which had the PIC in it is numb. I will have a CT in 3 months and a Pet in 6 months. We shall see. So Don't give up!!!! if one thing doesn't work there is something else to try.

God bless everyone fight this.

ejn58

lacer00 said:

Update
I went through 5 treatments of 5FU/cisplatin. They last one really did a lot of damage to my body. it effect my legs and hands with peripheral neuropathy. I was then sent to a intervential Radiology. He did a RFA thursday. He said that the two spots had grown but were still small enough to get. I am still recovering. one spot bleed so they gave me 2 units of blood. I hope that takes care of that problem. Funny the side effects you have that are not even connect to the problem. My arms were over my head to two hours and I am really having problems with them. The one which had the PIC in it is numb. I will have a CT in 3 months and a Pet in 6 months. We shall see. So Don't give up!!!! if one thing doesn't work there is something else to try.

God bless everyone fight this.

PET next week
Finishing up the last round of Xeloda/Cisplatin this week. Had blood clots with the 2nd and 3rd round so am now on Levoxan blood thinner. Will be getting a break from the chemo for a while at least per my Oncologist. Glad for that. Fingers crossed that the scan has promising news. Thanks to all.

duckyann

ejn58 said:

PET next week
Finishing up the last round of Xeloda/Cisplatin this week. Had blood clots with the 2nd and 3rd round so am now on Levoxan blood thinner. Will be getting a break from the chemo for a while at least per my Oncologist. Glad for that. Fingers crossed that the scan has promising news. Thanks to all.

Wishing you nothing but good
Wishing you nothing but good news with your upcoming scan!

mp327

ejn58 said:

PET next week
Finishing up the last round of Xeloda/Cisplatin this week. Had blood clots with the 2nd and 3rd round so am now on Levoxan blood thinner. Will be getting a break from the chemo for a while at least per my Oncologist. Glad for that. Fingers crossed that the scan has promising news. Thanks to all.

Good luck!
Best wishes for clear results on your scan!