3rd treatment failed, need support

Hi Helen, 

I’m sure you have come to the right place for advice and support, if not on this forum one of the users will direct you to the right people. Sending you positive thoughts, never give up hope, I’ve read so many times of positive things happening when things haven’t gone to plan. 

Take care, Adele. Xxx

Helen

I am truly taken aback by the incredible run of truly awful things you have happen to you since your diagnosis not least that you keep having reoccurrences after all the major medical procedures you have had.  I am so sorry about that and my heart goes out to you.

I was stage four with lymph node and lung involvement on diagnosis and those early days were very black.  They had great difficulty as my tumour was submucosal and biopsies revealed nothing and it took about 10 weeks of investigations to establish it was anal cancer.  I immediately started Googling for experts until I met my oncologist and she told me (with great authority) that this was her specialisation and she outlined very clearly what I had, where it was and how I was going to be treated.  I was truly filled with confidence, it was the first time that I had felt a glimmer of hope.  I researched her and found out that she was the UK lead for research in the UK, collaborating with teams worldwide.  She told me that she was hopeful that the cancer could be eradicated, and if not, long-term control.  I also found out that she has patients on long-term Paclitaxol-carboplatin who are many years down the line.  My first treatment was six months of this which I tolerated very well (much easier than chemo/radiotherapy) and everything shrunk.  I then had lung ablations and went on to have the standard chemo/radiotherapy.

I am aware that this is about you and not about me, but my history and what I was told is relevant to you.  I am clear to date, but what is key in this account is that my oncologist had patients on long-term Paclitaxol-Carboplatin.  I found out that as a result of her studies that the regimen for advanced anal cancer was changed world-wide because the results were so good and that Paclitaxol-Carboplatin was well tolerated. 

I am not an expert and have no medical knowledge.  But bearing in mind the very bleak picture you have been given, I would urge you to seek a second opinion (if you can) at a centre of excellence (where research is up-to-date).

I am thinking of you so much, please let me know how you are.

Irene xx

Hi Helen94 ,

Firstly I’m so terribly sorry that you’re facing this right now, I’m also a single parent, second rodeo for me, I was widowed in my early 40’s, it was bad enough telling my youngest daughter at 16 that I had cancer so I can’t imagine the turmoil you’re in having to approach that conversation yet again. What I would say is in my opinion the ages your children are if you don’t tell them soon they’re going to work it out for themselves, it will be a horrifically difficult conversation to have but it’s going to be a weight off your shoulders if you bite the bullet & tell them. For now if it’s any easier for you keep it to the fact that there’s still something there & you’re continuing with treatment for now, you don’t need to go into every detail just yet. 

Take comfort from what Irene has written here too, that the chemo regime being suggested is well tolerated & although I’ve not been in your situation I do agree that you’ve every right to ask for a second opinion on your individual case, maybe a fresh set of eyes would be a good thing. 

I think it would do you good to speak with someone too about your feelings regarding the loss of hope, do you have a Maggies Centre near you or any local cancer support services? Either of these will offer services where to can sit & speak with someone qualified about what you’re going through, there’s always the MacMillan Helpline too, some support really wouldn’t go amiss right now. 

We’re here to support you however we can, I wish I could just give you a hug right now but know I’m sending a virtual one over to you. 

Nicola

Helen,

I'm so, so sorry that you are facing this grinding wheel of diagnosis and treatments. My heart is cracked just thinking about what you've faced and dealt with and now what's ahead.

I've never heard of a case like yours but I HAVE heard many that are not curable but treatable. In almost all of those cases, there was a return to life and joy, even with the modifications necessary to deal with the cancer.

I've read ahead to what Irene and Nicola have said and I'm so glad they weighed in. I agree that you need to tell your kids. Yeah, it'll be hard news for them, but better than them figuring it out and being devastated that you didn't include them. You don't want to lay the weight of responsibility on them, but they absolutely need to know that they can trust you to be upfront and frank with them, and that your family unit can cope and move on.

I wish I were closer to you and could help. I know how much I leaned on my support folks and I think the hardest part of your story thus far is how little you have. I'm SOOOO glad you found your way here, because to the extent we can, we have your back. 

You may not have hope of a total cure right now, but you CAN find hope for a good life in spite of it. I think it starts by not telling yourself a story about being doomed, however true and appropriate it may seem in your current state of mind. I don't want to throw Pollyanna light and rainbows your way, we know the grim truth about coping with this awful disease. 

I thought it would make me tougher and braver. It hasn't at all. Cancer is not a gift, and anal cancer is doubly NOT A GIFT despite what some folks like to say.

But I think there is more for you, and more GOOD stuff, not just the endless butt-focused stuff. I'd get second opinions as to how to manage it (the heavy duty chemo may indeed be the right choice- but I'm betting there are other options to consider) and start putting together some sensible coping strategies with your kids. You'll all feel more in control when you've got a plan. 

Enjoy your vacation and firmly knock away thoughts of it having any sort of finality. I want it to be the time where you rediscover your joy.

Maybe you can't come back from this, but you can go forward and create something better than you can even dream today while you're in the pits. There is more for you in this very life, dear one. I just know it.

Hugs

Suz

Thank you so much Adele for your positive thoughts. After several days in my bed and the words you girls sent me following my sos here, I feel my state of mind changing a little..

Hi,

I had 1st carboplatin+taxol chemo, 6 cycles in 2021, which removed pet fdg signal in abdominal lymph nodes, but just reduced the primary tumor at ano-rectal junction.

I then had chemoradiation, that removed the primary tumor and i was NED for 1+ year. However, the primary at anorectum then relapsed, and doctors suggested either APR, or another systemic chemotherapy.

I refused both, as APR would not guarantee there will be no systemic relapse, while systemic chemo was of limited help during first line treatment, while significantly downed bone marrow functioning, yielding low white blood. So, another systemic chemo would kill my body resources soon.

At the same time i (finally!, should have it 3  years ago) had hpv pcr (privately) from anorectum, that found 5 hpv types, including 2 high risk.

So, based on my medical literature reading i suggested to my doctors i have topical immunotherapy, that they agree with. It was in july 2023.

This my treatment was similar to the one described in this medical article:

https://pubmed.ncbi.nlm.nih.gov/34987310/

It is based on an idea to control hpv infection, by boosting local (not systemic) immune response to reprogram it, so, body immune system, specifically local immunity does a job of eliminating the tumor.

It is now about 7 months as imaging tests (pet and mri) report there is no primary.

Hope this information helps.

Hi Irene,

thank you for taking time to tell me about your journey (what horrible things you’ve also been through) AND for the hope that I was missing: the belief in a life with paclitaxel-carboplatin without putting an end date on it.

I think that in my case it is not a question of recurrence but of relapse, if that makes sense. I think that radiotherapy did not sterilize the tumor and that at the end of each treatment, a microscopic part of the tumor, undetectable on the scan, multiplied quietly for 2 or 3 months before being identified on the images.
A detail that I didn't say: I am being treated in France. Before each treatment I had my case discussed by the best Professors from no less than 5 centers including Curie Institute and Gustave Roussy Institute, which are references in Europe. The only options I was given were:
-  back on DCFm again
- trying Paclitaxel-carboplatin, but without curative objective. (this sentence is just devastating).

So I don’t think I can have a different « second opinion » considering all the people already involved in the first one.

then, as I’ve just finished with DCFm with poor results, I’ve picked the second option. 

I’ll keep you posted

thank you again so much for this little light that you brought into my dark night, enough to get up this morning ️

H xox

Hi Nicola

Thank you for your support.

The stories that I read here, including yours, show that lightning can strike several times in the same life...(What are these demons who persist ??)

You are absolutely right, I must not hide this damn new relapse from my children. And of course, I won't give any details. Even on the days I don't have, I want my children to have hope every day.

I think I needed a few days to get over the shock of the failure of the 3rd treatment, once again, and the news that there weren't many other options left.

If you read the answers I’ve sent to the other members, you know I’m treated in France, and a lot of specialists already studied my case. 
I speak to a psychologist in the oncology department where I am being treated. She is very good and answers my calls when I feel very bad the time I’m not at the hospital. There are still times when I remain very sad, as if prostrate...Like yesterday.

And there are things you can’t say even to your best friends, or they won’t understand because unless they experienced it, they don't have the slightest idea of ​​the physical and moral suffering into which cancer can push you. Well, that's what I’ve noticed…Most of them have a « toxic positivity » attitude. (There is a thread and blog here on that subject by the way).

Can’t tell you how often I’ve been told « you’ll be fine. Cancer is well cured nowadays »….it just doesn't mean anything.

so, a big thank you for your hug too, that’s also what I miss so much 

H️

Hello Alex,

thank you for your message. I am delighted to see that in your case you were able to find a less violent treatment than what I had and that so far you are doing well, that gives hope !

May I ask you in which hospital or country  you were treated? because like you, after all the failures of my chemo treatments to overcome this initial tumor, I believe more in immunotherapy than another damn systemic chemo. 
Unfortunately it is not offered in this type of cancer in France (neither in Europe according to my doctors, authorizations for drugs are issued at the European level apparently). And there is no open clinical trial for which I meet the inclusion criteria ( either I don’t have the cancer they are investigating for, or they exclude people who have had previous radiotherapy or because a recent biopsy is obligatory and unfortunately in my case no surgeon wants to approach the tumor not even for a biopsy because it is in contact with nerves, arteries and the small intestine - I could end up connected to tubes with the impossibility of eating..). So, a local injection like you had would not suit me either, but it would be interesting to know where your team is located since in my case the Curie Institute and Gustave Roussy in France seem to be out of options.
I know that miracle solutions do not exist, but it costs nothing to explore what medical teams are doing on an international scale.

thank you very much for sharing your experience 

H

p️s: Biopsy after my APR showed HPV 16+ / Ki67, AIN3 (high risk)

Dear Suz,

thank you so much for your kind words. the gentleness and rationality in your message helps me to get back in my feet to face that new relapse. 
you, and others here (thank you girls) are right. I need to talk to my kids, otherwise I would f..ck up the vacation with that heavy secret in mind. Each time they were very brave and supportive. It’s just so hard sometimes to answer their questions like the one my boy asked when I came back from hospital after 3 weeks in hell:  « now the surgeons removed it, means you’re cured right mum ? ». I already knew the surgeon didn’t succeeded to remove it all, so I answered « well, you never know with cancer, but don’t worry, I will be monitored non-stop, if it ever comes back, they will see it and give me the appropriate treatment ». It came back. Twice. And I’m sad for them. 

And sad for myself as well, let’s be honest, not to have the life I was expecting after my divorce (7 years ago), my main expectations were as simple as peace and serenity, at last ! and also the joy of regained independence, possible future encounters and my career which was taking a great turn. Shot in mid-flight we say in France. Well, like all of us, there is no good time for having a cancer.
So the disease has taken control for the last 2 years and I must say that one of the hardest things to accept for me was to understand that this time in this "challenge" the results did not depend on me and my life will never again be the same. You are right to say that we have to find other strategies but damn, how many adjustments and concessions again ?! It looks like I still have to do some more, thank you for giving me this little kick in the ass. Another day or 2 of grumbling and I'll talk to my kids. 
You’ve seen it right, I have very little support and loneliness makes the journey even harder. 

I’ll keep in mind what you’ve said and especially the very last words of your message that go straight to my heart.

thanks for the hugs too

H

xoxo