Stage IV survivors?

Hi there,

yes there are several of us around! My story is much like yours...Initially dx'd in 2011 with Stage3b (treated with chemo/rad and in my case surgery for an ostomy), clear scans on the anal cancer until this past Jan. 2015 and I was dx'd with mets to my lung. I had been feeling great so kind of a surprise! I had surgery to remove the leftlower lobe of my lung that contained the mass and followed with chemo.

(One year after my initial dx I was treated for breast cancer as well that was found on a follow-up scan)

Other than watching a blood clot on my right lung, I have been feeling just great since ending the last course of chemo. This time was rougher on me as I lost a lot of hair and my nails are brittle and breaking off, but minor issues on the whole scale of things. I will not be shocked to hear that I need to face treatment again at some point and try to look at things as a chronic illness right now, but as I said....feeling great today so yes not just surviving but thriving!!

jad345 said:

eihtak

Thanks for replying - it's such a rare cancer that it's hard to find any information. I have only had chemo for the lungs, I didn't even know that you could have surgery. Maybe an option for the future if it gets worse.. I try to think of it as a chronic disease too, which is actually what it is if you think of it!

My hair is just starting to grow back, but I kind of like it - I never had short hair before. What chemo did you have for your last treatment? I've already had Cistoplatin, 5FU and Taxol so I'm wondering what  else is there? I also had a colostomy, which was nowhere as bad as I thought it would be.

Well, keep thriving!

 

 

 

My recent chemo was Cisplatin and 5FU (no taxol).  I actually had that the first time as well. There are other drugs being tested all the time and I know my doctor had considered using Carboplatin (sp) as he was concerned about hearing loss with too much Cisplatin. I had some ringing in my ears during the months of chemo but all seems good now. I think surgery (on the lung) was based on the size and location of the mass. Apparently mine was quite large...the size of a small peach! Yet, I was having no symptoms and it was found on a follow-up scan thank God!

My ostomy is permanent, is yours? Mine was meant to be reversed but radiation damage was worse than expected and after much back and forth, (and then the breast cancer) my doctor recommended NOT doing the reversal as it was thought that I'd be incontinent of my bowels. I saw a specialist and he was in agreement so now it has become second nature and no big deal most of the time.

My hair is normally really thick and although it thinned the first time, this time was much worse. I have worn it short for the past few years so wasn't that big of a deal, it just looks really bad right now....at least to me. Fortunately I am noticing "peach fuzz" coming in around the hairline and baldish spot in the back so am hopefull for thick curls again soon. My nails have me bothered....I have always had long strong nails and they are breaking off and growing out in rippled layers VERY slowly. Its not that I'm that vain, its just a constant reminder that I've been poisoned I guess!

So nice to hear from you, and hope you continue to move forward in health!

katheryn

jad345 said:

Hi katheryn
That's really

Hi katheryn

That's really interesting that you had cisplatin and 5fu twice. I didn't know you could do that. You're giving me hope that there are still options for me, especially since the taxol didn't teally work.

My colostomy was the same - it was supposed to be reversed but the doc said there was too much scar tissue. I have to say that it doesn't bother me at all now.

My hair was never that good. When I got my wig everyone that didn't know I had cancer was complimenting me on how nice my hair looked! When I go back to my real hair they're going to wonder what happened.

My only problem now is that I have nerve pain in my pelvis. I'm on Lyrica now which is helping but I still have breakthrough pain. I'm hoping to get some answers at my next appt. Other than that I feel totally normal.

It's so nice to have someone to talk about these things with, I live in ireland and  although I talk to lots of fellow patients at the Oncology center none of them have anal cancer.

Stay healthy,

Jackie

Hi Jackie,

Glad you found us and sorry that you needed to!   There are many stage IVs here, some of them are long term NED and others of us are still at the beginning stages of what we hope/assume will be a long journey.

I was diagnosed this time last year, immediately stage IV with a golf ball sized anal tumor and one slightly smaller on my hip bone with a suspicious lump in my lung.  The initial chemo and radiation wiped out the two pelvic tumors and I had a wedge resection to remove the lung tumor.  Then the cysts that they had been watching on my liver grew enough to see that they were cancer.  My doctors won't consider surgery for the liver tumors - one very big and two medium sized as I also had lymph node involvement, so I just went through the Cisplatin/5-FU treatment which did shrink the lymph tumors and the smallest of the liver tumors, but allowed the bigger ones to grow unchecked.

I am on the waiting list for the MD Anderson (Houston, Texas) clinical trial of nivolumab, marketed as Opdivo.  It is being used to treat advanced Melanoma and non-small cell lung cancer with a high degree of success - well, its around 35%, but that is considered high in cancer circles.  This will be the first time the drug has been used against a virus-driven cancer, which as I'm sure you know, doesn't behave like other cancers, so it is being watched with interest.  I should hear tomorrow when I will go in for the pre-trial checklist, which includes blood work, CT scan and another liver biopsy.  Apparently, the first few patients enrolled showed good response and I have high hopes for it.

I think Ireland has a National Health system, so I don't know when, if ever, they would be prepared to pay for this drug, assuming it gets approved, as the cost here is about $150,000 per year, which is why I want to get into the trial, where it's free.  I will post more once I get 'the call' and if I get into the trial.  This is an immunotherapy drug and could be a breakthrough for anal as well as other cancers.

Carol

jad345 said:

Hi Carol

Thanks for responding to my post. It makes me feel better to know there are other people out there who know what I'm going through.

Needless to say, here in Ireland, we have no clinical trials on this particular cancer as there are not enough people for a trial. I will ask my doctor about it though. I have private insurance but I don't know if they'd pay that much! I'm going to ask him about Panitumumab and Cetuximab. I haven't seen these mentioned on this site but they've been used in trials with some positive results.

Do let us know if you get the trial. We'll all be rooting for you. How do you feel at the moment? You seem to be keeping a positive attitude which I try to do as well.

 

Jackie

From my quick Google, those two drugs have been used quite effectively against colorectal cancer and head and neck, which if its squamous cell would be relevant.  I asked my oncologist last week if we could do the pinpoint radiation, or the spheres that deliver chemo directly into the biggest liver tumor that is bothering me, to see if we could shrink it a bit, but he said no.  They are used on colorectal mets to the liver, which he said were very different from anal mets so he didn't know if they would work, and he said that this is not the time to experiment.  I spend quite a lot of time on the colorectal forums because there are more people there and we share a lot of the same issues, but apparently not the same chemos.  The trouble, of course, is that there has been so little research done on anal cancer because it is so much rarer.  I would be very interested to hear what your doc recommends and what he says about those two drugs.  My oncologist was getting a bit antsy about waiting for the trial, said I didn't have the luxury of hanging around to wait for it (always reassuring to hear!) and we needed a plan B.  Apparently, he talked to Dr Eng in Houston and they came up with something, but I don't know what, as my onc just said we can deal with that if it comes to it.  In the meantime, it looks like I may start on the Opdivo by mid-August and he was comfortable with that.  The waiting is always the hardest part - well, other than the vomiting, diarrhea and vasospasms of course!

Right now, I am getting some pain under my right rib where Big Ugly (the biggest, oldest tumor) resides, but it might just be from a pulled muscle - I hope.  Apart from that, I just feel really tired and run down, but that's because I don't get any restful sleep at night despite sleeping pills.  I'm sure that once the trial is under way, I will feel much better.  Thanks for asking, and yes, it makes me feel better too chatting with fellow sufferers, especially ones that are doing well.  I think this is a great place to exchange experiences with the different chemos and radiation and the side effects thereof.  I know they do some things differently in Europe and you may have drugs that are not yet approved here and vice versa, so its good to hear the different approaches.

Over here, Opdivo has been approved for both melanoma and non-small cell lung cancer and I know of one girl who got her insurance company to pay for it on the grounds that her lung tumors could very well be non-small cell lung cancer as they haven't been biopsied.  Of course, they know perfectly well its a 95% chance they are anal cancer mets, but it worked.  If you have lung mets, that might be worth looking at.

Carol 

I was diagnosed stage iv in March 2014. Anal cancer w mets to nodes and liver. Sought 2nd opinion through MD Anderson Cancer Center. Took their advice and chemo regimen... which I brought to local hospital. Did high dosage chemo for several months. In October 2014 I was reduced to "maintenance chemo".... but my body kept responding. In Feb. 2015 I was told NED in liver and anal regions. Then, I did 6 weeks of radiation on node. In June I had scans revealing met had returned to liver and spread to lung. I'm back on higher dosage chemo. I never had colostomy... which is a blessing. MD Anderson states I am not a candidate for clinical trial b/c I am still responding to chemo. I go back for scans in early September. I'm tired from chemo... but I am still active. I also have some bathroom issues from the radiation. I take it day by day. Feeling blessed with the present moment.

jad345 said:

Tall Order

I'm just wondering, what chemo are you on? My cancer did not respond to my last chemo which was Taxol. My doctor doesn't know what to give me now. I'm looking for ideas.

 

Jackie

I had chemo treatment last week. And so it's taken a few days to get up and running. I'm doing taxol, carboplatin, and avastin. I have scans in two weeks... and I'm praying body's still responding as it has previously. I've read about people doing something called xeloda. I don't know much about it. But maybe something else to discuss with doctor. Wishing you all the best.

jad345 said:

thanks for getting back to me

I think I'll be having Cisplatin and 5FU again. I haven't heard of avastin or xeloda being used for anal cancer. I must check them out. Let me know how you get on with your scans. Three drugs seems a little harsh, hope you're not feeling too bad.

Thanks so much. Apparently Avastin has been successful treating cervical cancer, which is also hpv cancer. My doctor felt it was worth a shot. Not all insurance companes may cover it, however.