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what treatment did you get

lperry01
Posts: 10
Joined: Jul 2011

Hi everyone. I posted a while back when my mom was diagnosed with anal cancer and she was going through so much pain with her radiation.. We finally made it through that and then more bad news came our way. I was wondering if anyone can tell me what chemo they received for anal cancer. My mother was diagnosed in June with anal cancer and was treated with 5Fu and mitomycin. She had 2 rounds of each and she also had 7 weeks of radiation. Well she just had a PET scan in early September and to our surprise, she had "liver spots." A biopsy last week confirmed she had mets to liver. A true shock and disappointment to both her and I. The doc tells us that obviously she has had liver involvement for a while and since she never had PET scan til now, we didn't know. So here I sit now, saying all that chemo and radiation to her anal area, all that misery she went through and here we were expecting good news and then find out about the liver. So of course I am sad and want to know what more we can do. The doctor told us that he can try one more drug called cisplatin. He told us that even if he knew about the liver in June when she was diagnosed with the anal cancer, he would have treated the same anyway....with 5FU and mitomycin. He then said that her type of cancer seems to be aggressive and that cisplatin is the only other drug he can try. He said it works really fast and that after 4 days of it, he will repeat PET scan in 2 weeks and see if liver tumors have shrunk. If so, great! Then she gets another round of cisplatin and we take it from there. If not, then he said, that there's not much more we can do. So here I sit scared to death about my mom anticipating what we will get told in 2 weeks. Will the cisplatin work? And if not, is there really nothing else he can try? Anyone out there that has anal with liver mets,please let me know what else maybe is available. He did mention some kind of liver procedure where he can blast the tumors, forgot the name. But as far as chemo, he said that's it.
Thanks for your feedback.

Lorraine

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

I urge you to join this forum: Rare Cancer Alliance. I mentioned to you on another thread a member on that forum who is seeing great results with treatment for liver mets at Fox Chase in Philly. Get on that forum and register. As soon as your registration is accepted, you can view a couple of threads that will give you much more information: "Tim's Good News" and "Stage 4 Thread." If you have any problems getting on this forum, please let me know.

lperry01
Posts: 10
Joined: Jul 2011

is that a forum on this site or the Fox site?

lperry01
Posts: 10
Joined: Jul 2011

hey sorry, just really confused now. i went to the fox chase website and typed rare cancer alliance in the search box and nothign popped up. i did the same on the acs website. is rare cancer alliance a website i have to go to? when you say to "get on that forum," how do i even find it to join it?

duckyann
Posts: 162
Joined: Jun 2009

Hi Lorraine,

You have to type www.rare-cancer.org and register. You type this on your address bar of the Internet Explorer or whichever internet service you use. If you need anymore help let us know. I am also a member of Rare Cancer Alliance.

Nancy

I hope that I don't get in trouble for posting another website.

z's picture
z
Posts: 1251
Joined: May 2009

Copy this and put it in your browser line.

http://www.rare-cancer.org/forum/ucp.php?mode=register
(Rare Cancer Alliance)

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

Thank you everyone who provided additional information on how to get to the Rare Cancer Alliance Forum. I hope this helps you Lorraine!

pjs62
Posts: 95
Joined: Sep 2011

Hi Lorraine;
I understand your frustration...& your mom's. My anal cancer was treated same as your mom's was (from July 2010-Sept. 2010). Then Oct. 2010 after a colonoscopy/biopsy I was told by my drs I was in remission. But then just this past Aug. I became very sick so they did ct scans, then colonoscopy/biopsy. I was totally 'blindsided' when the drs said the 'cancer is back'! They wanted to do major surgery but I decided to get a 2nd opinion at a different Cancer Center & am thankful I did. Yes I'll have to do the colon prep, etc all over again but it may just show that my 'old drs' tested too soon & all may be ok.
I highly suggest your mom getting a 2nd opinion to be sure of all the options. I've also learned so much from the 'support group' here on this discussion board. Please keep us informed. I pray things will work out for the best for your mom.

pjs62
Posts: 95
Joined: Sep 2011

Hi Lorraine;
I understand your frustration...& your mom's. My anal cancer was treated same as your mom's was (from July 2010-Sept. 2010). Then Oct. 2010 after a colonoscopy/biopsy I was told by my drs I was in remission. But then just this past Aug. I became very sick so they did ct scans, then colonoscopy/biopsy. I was totally 'blindsided' when the drs said the 'cancer is back'! They wanted to do major surgery but I decided to get a 2nd opinion at a different Cancer Center & am thankful I did. Yes I'll have to do the colon prep, etc all over again but it may just show that my 'old drs' tested too soon & all may be ok. If they do find cancer, they have other options they'll try. (minor surgery & bachtherapy even though I was told 'no more radiation'.) I'm blessed with my new medical team.
I highly suggest your mom getting a 2nd opinion to be sure of all the options. I've also learned so much from the 'support group' here on this discussion board. Please keep us informed. I pray things will work out for the best for your mom.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

I am so sorry to hear that your Mom is going through this. I was one of the people who did not have Mitomcycin. I had Cisplatin. I did'nt have liver mets but I did have two small spots on two lymph nodes. The Cisplatin was tolerable. It didn't wreck havoc on my body for which I am grateful.

Liz

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

I am fortunate to share the same doctors as LIz and am having cisplatin also. (also VERY blessed that Liz has been an angel to me and helped me get through these first 3 weeks.). AND her advice, having already been there is right on.

i too am sorry your Mom has to go through this, and sorry that you are going through it as well. It is sooo hard watching your loved one make this journey.... But you will never regret being there for her...lori

sandysp's picture
sandysp
Posts: 786
Joined: May 2011

Do Doctor's have to fight insurance companies to get Pet Scan's? Mine wasn't done until a week before treatment, when it seemed logical to me that it would have been done sooner. I don't get it. But your post is upsetting to me. I feel she should have been scanned before treatment. God bless you for being with her all through this. I can't imagine how hard this has been for you.

Praying for you and your family . . . Sandy

lacer00
Posts: 12
Joined: Jul 2009

Hi Lorraine

I too have had anal cancer. I started with the 5FU, Mitomycin and radiation. After the original cancer was gone it Mets in my lung and liver. I went through 5 rounds of 5FU and Cicplation. It cleared my lungs but didn't clear the liver so I had Radio Frequency Ablation. 3 months later it is back in my lungs and so they put my on Xeloda for 4 rounds. It has not helped and the spots in my lungs have grown and it is once again present in my liver. I don't know what we will try next. has anyone had any other types of treatments? My Dr is going to contact MD Andersen's and see what suggestions they have.

I understand you and your mothers fears and pains, I have to continue to tell myself. LET GO, LET GOD.

Deborah

z's picture
z
Posts: 1251
Joined: May 2009

Please go to the RCA web site (Rare Cancer Alliance) there are several survivors who have gone through treatment and a couple who are in clinicial trials, and Tim started with 30 to 100 tumors in his liver and is now down to 1. Winnie had liver mets and is now clear There is a stage IV thread to tell what types of treatment. I expect to see you over there. Lori

mp327's picture
mp327
Posts: 2895
Joined: Jan 2010

Please check out the website for Fox Chase. There is a clinical trial going on there for metastasized anal cancer. You can get a lot of information about it by joining RCA, as Lori has recommended, and reading through the stage 4 thread. Tim on RCA is currently in this clinical trial. Please let me know if you have any problems signing on to that forum.

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