Any others with Stage IV anal cancer?

We have one or two stage 4 survivors on here and I hope they'll see your post and respond.  It's great that your cancer is gone in the original site, but I'm sorry you are dealing with the mets and that surgery is not an option.  I hope you will continue to do well on the chemo regimen.  It's great that you are in good health, other than the mets, and I hope that will continue to be the case.  Good luck with the next round of chemo and please keep us posted on your status.

Martha

I am stage 4.  I was dx'd w/3b ac 7/21/13 but advanced to 4 when a nodule & 2+ nodes were found in my lung+ for ac 8/20/14.  I had a VATs procedure w/lymphadenectomies 8/20/14.  A PET 10/14 showed a new nodule in the RLL but the thoracic surgeon does not think this is malignant.  I'm holding my breath!

My oncologist is pretty much gloom & doom.....so I am thinking chemo is in the forecast:(

I am sorry to hear of your status!  Curious...why no radiation rx initially?

Keep in touch!  I did put a little blog about me at this site.

Nic

tallorder5793 said:

Thanks

Thanks Martha for your response. Yes it would be great to hear from others dealing with stage 4 or anyone in general. My community does not have any support groups specifically for anal cancer... and I am reluctant to visit with a general group. Finding support is a challenge. 

I do not have stage IV cancer, so cannot help you there other than to give you my utmost empathy and hope for the best to come to you.

I know exactly what you mean about not finding local, specific, empathetic support. Been there, too. I made a lot of calls until I was finally referred to the Hudson Valley [NY] Cancer Resource Center and the great woman who started this group and guides it, Casey MacDonald, referred me to the HPV and Anal Cancer Foundation. I then e-mailed with a person from that organization from time to time when I had questions.

Finally, I found this forum after my treatment ended. (Wish it was earlier!) Then that wonderful Casey MacDonald called me to say that a person volunteered to help at the HVCRC who was a 6 year anal cancer survivor. She remembered me and got us together (the little match-maker). My new "Butt Buddy" and I talk on the 'phone, e-mail, and lunch. She's an inspiration!

I see now that the HPV and Anal Cancer Foundation offers "Peer to Peer Support". They promise to match "cancer thrivers" and caregivers with an volunteer within about a week who will communicate via telephone, e-mail, text messaging, video chat, social media (messages have to be private), or face-to-face. Here's the page so you can obtain your own "Butt Buddy" if you want: http://www.analcancerfoundation.org/resources/p2p/

tallorder5793 said:

No radiation

Thank you for responses. I will explore Anal Cancer Foundation further. 

Nic asked why no radiation... I've been told by doctors it would be too toxic to my liver- where I have secondary cancer. I asked about radiation of the lymph node... but docs said it would still be too toxic to liver. Curious if there are any people out there who had different experiences--that is, they had successful radiation of node despite secondary tumors in liver.

That said, chemo has been doing wonders. The anal tumor is no longer evident. Liver and node tumors dramatically decreased.

It's ignorance, perhaps, on my part.  However, the radiation (XRT) is directed to the pelvic area.  When you say secondary you mean metastasis?

I am so happy for you that the chemo is effective:)

Nic

tallorder5793 said:

no radiation

Yes thank you, I mean mestastasis. When I see MD Anderson docs next week, I will bring it up again. Thanks for well wishes.

If you are curious to read the standard protocol for anal cancer created by the National Comprehensive Cancer Network (NCCN), it's free, but you have to register. I don't know if I did something goofy, but they wanted me to enter my company's name in the form. I made one up. Then you can search for the "Anal Carcinoma" standard protocol. This is apparently the standard that most providers in the US follow: http://www.nccn.org/

horsepad said:

S

I was diagnosed with Stage 4 in August 2011, same as yours, spread to lympth nodes and liver.  I was pretty much told to kiss my **** goodbye!  Although no one would tell me how long they thought I had.  My treatment plan was totally different than yours.  I did the standard treatment, 6 weeks of radiation and chemo (mitomycin & 5FU).  I had a pet scan one month after treatment.  Anal tumor gone but Lympth nodes and liver still lit up.  I had 4 oncologists at 2 different medical facilities.  They rarely agreed on anything (except for treatment plan).  I was told Pet Scan shouldn't have been done until 3 months after treatment because chemo and radiation still working so had another scan 3 months later and everything was gone!!!!  Thank you Lord!!!!  I had a liver resection to remove dead tumor a few months after being declared NED.  

I am a living example of Hope, faith, and miracles!   Please don't believe statistics.  I had auto immune problems before diagnosis which concerned me so I wasn't in good health to begin with.   I feel great, I have no side effects (except short term memory bad) but that could be old age       In fact I had ostepenia before I started and after treatment, ostepenia gone!  Also had constipation issues before treatment, no problem pooping now!   I am 54 years old, widowed during treatment and raising two grandchildren.  Fortunately I am retired (worked 30 years and was diagnosed stage 4 one month after retiring).  I farm 70 acres by myself, raises horses, chickens, cats, dog.  I volunteer for 8 different organizations, one is ACS driving patients to their doctor appointments.  I tell my story to patients, and am glad I provide hope to other cancer victims.  Everyday I thank the Lord for giving me another day.  I know the cancer can come back but I also know alot of other things can happen to me too.  

I was curious how many lympth nodes and how many tumors in liver?  I would want to know why you weren't a candidate for radiation.  I know my radiation was directed at tumor in anal canal and lympth nodes, not liver.  

If you ever have a question, or I can help you in anyway, please let me know.  I wish I would have found this site during treatment.  I wish I could have communicated with other stage 4 survivors during treatment, I was so scared.  Stage 4 survivors of any cancer are an inspiration to me!

 

Patti

You are a great inspiration. My cancer was Stage IIIB with lymph node involvement, so pretty darn close to Stage IV really, although they never called it Stage IV....   Treatment got rid of it, Thank You Lord!!!!  .... So good to read how well you are doing! Amazing to me that you farm 70 acres and do so much volunteer work! I'm doing well and do some volunteer work, but don't have your kind of energy! Thanks for your wonderful post! You are a great inspiration and give us late-stagers hope that all will be well! I wish you continued good health!

You should have other professional opinion about the possibilty of liver resection. Also visit the colon cancer group here, unfortunatelly there are lot more

Stage 4 patients there. Congrats on the partial success from the chemo.

Laz

deeholliday said:

I was diagnosed w/ stage 4

I was diagnosed w/ stage 4 anal cancer Nov. 2, 2012. I had an 8cm tumor growing upwards toward my tail bone, two lymph nodes involved, and two tumors in my liver. My husband heard there was not much hope, but all I heard was I might not ever return to work. I teach, and I think this was more devasting to me than what my husband heard. I had 6 treatments of cysplatin and 5FU.  Becuase I was young (50) and healthy, my oncologist perscribed the most aggressive dose allowable. She said the side effects would be very difficult for me to withstand. Long story short, I did very well with the treatments (better than anyone they had ever seen). My case became well known in the cancer fighting department of the hospital. After two treatments, there was no evidence of cancer. For precaution, I finished the six treatments. Every PET showed no evidence of cancer. Massive doses of radiation were next for precaution. It was there that I first heard that I was never expected to live through the six treatments. My radiologist said the only reason he ever expected tosee me again was for palitive care. Twenty-five treatments and severally burnt skin later, PET continued to show no evidence of cancer. First three month post treatment PET, still good. And then.... after having my port removed and another PET, I was told last Dec that the PET showed two tumors on my liver again. I was very angry. My oncologist was so disappointed. But, it turned out to be a good thing. She said because I had done so remarkablly well with everything my body endured, she had to think outside the box when making decisions about my case. She explined that most stage 4 patients are not concidered for having resections. Why I have no idea. If they think you're going to die, why wouldn't they at least try it? But anyway, I saw my surgeon, and he was amazing. One concern was that one of the tumors was very close to the vena cava and it could casue hemorrhaging. A month later I had my whole right lobe (60 percent) of my liver removed as well as my gall bladder. Four weeks after I returned back to work. I have had many people recognize the miricle the Lord performed on me more than once. I, like many other cancer survivor, realize I am living on borrowd time. However, I am thankful for each breath God gives me and hope to be a testimony for others facing the same valley I was led through. 

I just read your post and must tell you that your story inspires me very much!  I am so glad you came here to share it with all of us, as it gives us all hope and encouragment to keep on fighting, no matter our circumstances.  I'm so glad you are doing well and may you continue to do so.  I'm so happy your doctors did not give up on you and that you did not give up on yourself!  I wish you all the best!

Martha