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Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Hi Chaps

If you dont know me and want to see my full story from when I was diagnosed May 1st 2013, check my about me page

The Problem

Ive been on Nivomulab (Optivo)since February of this year. No side effects, cancer (all metastatic tumours in my lungs) reduced by about 1/3

Right hip replacement to replace necrotic joint End of June

New scan showed continued reduction or stability in all my mets apart from one, which increased from 4 to 6.5 cm.

The Plan: The Abscopal Effect

Fox called it right when I had never heard of it. It means ab(away) scopal (from the aim) effect

In other words: Stay on the Nivo, and blast the main tumour with a lot of radiation. This causes the tumours they're not even aiming at to try to defend themselves and thus reaveal themselves to the antibodies reinforced by the Nivo.

All very new. The science journals only turned up one survey paper on this technique

What happened: 

After 7 days they called a halt to the radiation, because I'd already recieved 3 times the standard dose and anymore migh seriously harm me

The next day they stopped the Nivolumab for the same reason.

I'm a bit confused because surely the treatment has to be excessive to achieve the desired effect.

Symptoms

Fatigue is a biggy. I wake up to sleep

Chest hurts and feels exactly as if I have smoked 40 Camels

Smokers (productive) cough. No blood

When I cough the pain in my new hip LITERALLY throws me across the room

Dry mouth and throat

Feet swollen and itch/hurt like buggery

Next

See my onc on Tuesday, want to get back to Nivomulab as soon as possible

See Dr Radiation on Friday (He's brought this forward a week and I DONT KNOW WHY

FEELING A BUT DISPIRITED like the Docs have done a Bottle job on me.

 

 

rhominator's picture
rhominator
Posts: 170
Joined: Nov 2015

Hang in there Footstomper.  I feel for you.  Knowing the pain in advance of an oncoming cough must be horrible. Dang. :-(

Thanks for the update though, this is new material for me.  I hope it works!!

Not sure what a "bottle job" is, but it doesn't sound complimentary.  In the states, it could be "a woman who dyes her hair".  My wife calls the process "going to the bottle".

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Sorry, a bit of cockney rhyming slang crept out there. Bottle and glass = class. Usually used when someone is found lacking in courage.*

Of course there are other words that rhyme with glass, you have to work it out by context. It could have been worse:

Aris = Aristotle = Bottle, bottle+glass = class

*I was wrong. As I ache inside and out today, they probably made the right decision.

stub1969's picture
stub1969
Posts: 417
Joined: Jul 2016

That sounds kind of alien-like.  Weird!.  I sure hope it worked, Foots.  I'll be thinking about you and  praying Tuesday and Friday bring good news.  Just to lift up your spirits a little and bring a smile to your face--I know you're a former high school teacher.  We are celebrating Homecoming activities this week.  I know high school teachers feel this is the best academic week of the school year and the true impact of your hard work shines (wink).  Hope this brings back some memories.

Stub

todd121's picture
todd121
Posts: 1261
Joined: Dec 2012

I can't imagine pain that bad. Must make the feeling of an oncoming cough unpleasant!

Sure hope the treatments continue to be productive. I'm not clear why they stopped the drug if you weren't having side effects? And which tumor did they radiate? One in the lungs?

Always appreciate your posts even though I rarely chime in to discussions.

Best to you,

Todd

Jan4you's picture
Jan4you
Posts: 1168
Joined: Oct 2013

Awww Foot, hope you can stomp out this effect soon and start to feel better, hon.

Hope you get better news that your treatment is effective.

I am heartbroken that you are suffering so.. sigh

Sending you a heartfelt connection and HOPE for relief soon!

Gentle hugs, Jan

APny's picture
APny
Posts: 1504
Joined: Mar 2014

I'm so sorry about the excruciating hip pain. It's not something you need on top of all the other things going on. Hoping you get relief soon and back on meds that have helped. Keeping you in my thoughts xo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

It just means I enjoy the gaps between the coughs more. :-)

pamstayner's picture
pamstayner
Posts: 102
Joined: Apr 2014

I hate that you have had to stop the Nivo... I am going to follow you close Footsie... you and I started the Nivo about the same time.... so of course I compare myself to you.  Please be well

Pam

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'll do what I can Pam. I see my onc tomorrow.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

back on the Nivo. Getting infused as I type 

hardo718's picture
hardo718
Posts: 771
Joined: Jan 2016

You're in my thoughts & prayers.  I'm so sorry to read you're still suffering with this.  Looking forward to some good news from you soon.

Hugs,

Donna~

penitent
Posts: 57
Joined: Jun 2016

Sorry to hear what you're going through.  John is starting his first infusion of Nivo today and I hope that it has the same result as you for the mets in the lungs.

Take care...

donna_lee's picture
donna_lee
Posts: 761
Joined: Feb 2009

So, you take the lorry to the Doc.  Now, do they take your temp in the boot or the bonnet?

Wish all our Good Wishes could do some good for you.  Please know that we are hoping and praying.

donna_lee

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I take the jam jar down the frog and toad to see the doc. I'm VERY pleased to say that the temperature is  definitely taken under the bonnet ( in my north and south in the middle of my boat race to be precise)

I really just want to get back on the Nivo as fast as I can. It seemed to be working apart from that one met. Surely it has to help achieve this abscopal effect even if I have no more radiation.

marosa's picture
marosa
Posts: 270
Joined: Feb 2015

Very much!

Jan4you's picture
Jan4you
Posts: 1168
Joined: Oct 2013

Back on the NIVO.. its good news right? A sign all systems good to go now?

Hugs my dear man,

Jan

Skagway Jack's picture
Skagway Jack
Posts: 205
Joined: Oct 2013

Foots,  Keep on stomping!

 

 

stub1969's picture
stub1969
Posts: 417
Joined: Jul 2016

One down Foots.  Today went well now let's pull some good news on Friday. 

Stub

 

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

Wow, Very sorry to hear what you have been going through. Prayers going up for you.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I was disappointed that the abscopal effect (which sounded good  for myself and the future) was being abandoned. I think that I have a lot of radiation still in my body, and restarting the Nivo gives me hope that the technique might actually be tested.

If it works I think its a game changer.

How are you doing?

APny's picture
APny
Posts: 1504
Joined: Mar 2014

Hope the hip pain lessened. And glad to hear the temp is taken in the bonnet. I don't think you need anything in the boot at the moment.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Spoke today, took the temperature under the bonnet, and he seems satisfied that he has failed to kill me. So, still having recieved a massive dose of Radioactivity for a week with a dose of Nivomulab two weeks before and a day after, the team seems to think that the abscopal effect is still on.

I'm trying not to get excited about it (it still seems a bit of a bit of a long shot) but if the abscopal effect works, its a cure and not just for me.

I guess I'll have a CT scan in a few weeks and then we'll know.

stub1969's picture
stub1969
Posts: 417
Joined: Jul 2016

I can understand your hesitation, but this is really good information for you.  I'm praying for good results.

Stub

marosa's picture
marosa
Posts: 270
Joined: Feb 2015

Are those scottish genes you "wear" hereditary???  I want them!  Never mind the dominican and spanish ones in my blood!  I want my 1/4 scots!  Keep on stomping Stomps.   Have had you in my thoughts all these days.

 

hardo718's picture
hardo718
Posts: 771
Joined: Jan 2016

You deserve all the best, and thank God they checked your temp under the bonnet....yikes!!  haha

You're a bit of Scottish?  Me too!!!   Well, that and Italian.  :-)

Donna~

Debbie2016
Posts: 7
Joined: Sep 2016

i hope you are feeling better very soon. Pain, is a pain! 

-Debbie

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

Sounds like to much pain. For this reason I have decided to be a chicken and turned down my Dr.s request to do radiation on my hilar mass. God bless you.

Jojo61's picture
Jojo61
Posts: 1278
Joined: Oct 2013

Stomps, you are one tough cookie! So sorry for all the pain and discomfort that you are going through. Keeping good thoughts coming your way!

Take care of yourself!!

Hugs

Jojo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I get pain from coughing, which is a side effect, brief but bloody painful. Easily dealt with, and I'm sure you've all dealt with more. I have a varying heaviness in my lungs but I'm told thats normal and really its no worse that how one feels when smoking heavily.

I'm not a tough cookie, but it is a chance at a cure. I'm really excited to be part of the research on the abscopal effect, which if it works, would be a real game changer in the treatment of cancer. This sounds not just a hope for my self, but a privilege to being hopefully involved in helping others

No results as yet. I have a slight discomfort in my lungs, but the hope is that when I get a scan in maybe a month there will be no cancer. I feel very good about this but try not to put too much weight on the result. It will just be another stage in my relationship with cancer.

So we'll see what happens.

Thanks for all your good thoughts and prayers.

PS: I'm not Scottish, I'm a bit Viking, a bit saxon, a bit French, a bit Irish, a bit jewish, a bit christian. In other words a Londoner.

njkate07's picture
njkate07
Posts: 19
Joined: Aug 2016

Been following you here and reading your posts.

They took hubbie off Votrient on 09/05 because the diarrhea even with prescription meds was not manageable.

He starts tomorrow on infusion with Opdivo, keeping my fingers crossed. He will be infused every other week

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm very well aware of debilitating diarrhea. I used to judge my days by how many pairs of trousers I got through, or even if I got enough time to get a pair on. I dont want to get anyone's hopes up but I have had pretty much no side effects in the 10 months I've been on Opdivo. This is wonderful, but as I'm sure you know, doesnt happen for everyone. So I hope Hubbie gets lucky! I also get an infusion evey two weeks which is really easy, it takes about an hour. 

It worked really well as well, reducing all my mets in the first 3 months. I hope your hubbie has a similar experience. After 6 months I had one met growing in my lung which is why I'm undergoing experimental radiation therapy. Still not much in the way of side effects,I'm glad to say, but it'll be a few weeks before I get scans to see if it worked

So I wish you my first 3 months forever. :)

foxhd's picture
foxhd
Posts: 3055
Joined: Oct 2011

this takes so much patience. I am really a big fan of the nivo. Sometimes it presents as failure but I believe it appears that way because of the way it inflames the tumors before they are destroyed. With it can come a fair amount of pain. Unfortunately since it is a life and death risk, we all get yanked off of nivo if there are questions of it being ineffective.

Again, when on trial, I was on 3x the normal dose of nivo for 18 months with zero side effects and 90% reduction of my tumors. This time nothing but multiple new tumors and a lot of pain everywhere. Every day I try to figure out why but I am stumped.

Anyway, I say that anyone with the chance to try nivo NEEDS to give it a try. And hang on as long as you can before necessity dictates another change. When you have mets, the realistic goal is to remain stable for a long healthy life. And for someone who is benefitting from nivo, and has minimal SE's at worst, try to find a way to make it work. This is how cancer becomes a chronic disease. Footsie, we share this goal together.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

We all get stones in our pathway, and thing is with Nivo/Opdiva is its so new there are bound to be misteps, new problems and new possibilities, new treatments.

But as you say, minimal side effects. I think it will work. It or a development of Nivo. Cancer will become a chronic disease. Its a real privilege to be in at the beginning, to think that what I do with the abscopal effect may be of benefit to, who knows how many, who knows how much?

As you say, we share this goal. I dont know about you, and maybe its because I'm married to a research epidemiologist, but it really is bloody exciting. Almost gives the bloody disease a point. Almost...

foxhd's picture
foxhd
Posts: 3055
Joined: Oct 2011

Is there a fear of radiation? I just finished 5 more days of radiation to my right shoulder. In the last 3+ years, I've had radiation to my rt. shoulder, left shoulder, 3 or 4 different vertebrae, 3-5 ribs, left femur, base of skull to t-2 at least twice. What did I forget?

Anyway, despite my experience with several drugs, nephrectomy, chest biopsies and radiation, I am able to tell everyone that I am currently pain free for the first time in at least 3 years!! And radiation has been as important a treatment as anything. I cannot be concerned about the long term effects of radiation because I won't be here in twenty years anyway. Without my spinal radiation I would be completely paralyzed by now. The pain I've had would make me cry. Even on oxies. It's been a long haul and as short lived as my current reprieve is, it is a welcome victory. If any one is concerned about radiation exposure and is stage 3 or 4, I think your concern is misplaced. To me it is a sure thing. It has helped everytime.

Jan4you's picture
Jan4you
Posts: 1168
Joined: Oct 2013

YAAAY FOXY-baby!!!!

 

Free of pain, so well deserved, brings me to tears for you!

Hugs, Jan

hardo718's picture
hardo718
Posts: 771
Joined: Jan 2016

To read that you are pain free for the first time in 3+ years??......music to my ears!! 

Hugs to you,

Donna~

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Brilliant news Fox! 

And I agree if you've got high grade cancer its a bit silly worrying about radiation!

foxhd's picture
foxhd
Posts: 3055
Joined: Oct 2011

the hi jacked thread. Please, no one else comment here. I'll open a new thread.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

We seem to have both had similar experiences and, it seems, a fairly similar outlook.

Iggyrip
Posts: 36
Joined: Sep 2016

Stomper, I wish you the best.  I am new here, but I have appreciated your posts and experiences. Hang in there.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

To say there is nothing is happening. Still getting the Nivo, and the radiation seems to have done little harm. I'm a tad chesty, so they have given me an inhaler and I feel like I'm functioning at about 85-90%, apparently a result of the amount of radiation they've given me. So nothing to complain about.

Apparently they will do the scan in December. December? I want to know now!

But I have to wait for the radiation to do what radiation does - which takes about three months apparently.

And I have to be patient for Nivo to do what Nivo does alongside radiation.

In the meantime I'm learning the mandolin, collecting historical sources for schools, walking the dog and eating Steak an Kidney Pie with kale (or chard).

I want  to know if its working!

All these different treatments have spoilt me!

No probs, only optimism and hope.

todd121's picture
todd121
Posts: 1261
Joined: Dec 2012

Hope it's working and I definitely understand wanting the results. I get impatient waiting a week for my scan results. I don't know if I could stand 3 months.

I tried to take up mandolin last year. I bought a cheap one. I think that was a mistake. It doesn't stay in tune even long enough for me to play a few minutes on it. How are you teaching yourself mandolin? Books? Youtube?

Been thinking about banjo too...

Thank you for your updates. I'm so glad to read them.

Best,

Todd

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

http://www.mandolessons.com

You need a decent one because the pressure on the strings is enormous. It has the same tuning as the 4 string banjo and the violin family.

The 5 string banjo is the real bluegrass/folk one and is surprisingly great at playing jewish folk songs (a brand new career on the Bar Mitzah circuit/) and christmas tunes.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I'm getting a scan Friday next week. So we'll find out whether this abscopal effect thing works or not.

Its so new, I'm really excited about the science. As is my oncologist and the radiation team.

(Scanxiety will probably set in about tuesday!)

foxhd's picture
foxhd
Posts: 3055
Joined: Oct 2011

I hope it works for you. Best of luck stomps!

rhominator's picture
rhominator
Posts: 170
Joined: Nov 2015

Hey Stomps, thanks for the updates.  I can't wait to discuss this topic with my Oncologist.  Meanwhile, I hope you're building up callouses from your mandolin while I do the same with my 6-string.

gregslovey
Posts: 31
Joined: Oct 2016

good luck with the scans!  I've been following along with all of you for quite some time before I joined.....I think you are all amazing, strong wonderful people.  I hope so bad this treatment did what you hope for.   

My husband's first set of scans after starting Votrient are on November 2.....we are starting with scanxiety already. 

 

lobbyist0724's picture
lobbyist0724
Posts: 236
Joined: Sep 2016

Good luck with the scan and treatment! Immunotherapy should be the path to a potential cure and it is still a new tech that we are developing. Just read from the news last week, there a new drug is out performing Sutent!

<a href="http://www.curetoday.com/articles/cabometyx-bests-sutent-in-reducing-risk-of-progression-or-death-in-metastatic-kidney-cancer">Pfizer's Sutent comes up big in adjuvant trial, staving off cancer for 6 years-plus</a>

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Click on my name and you'll see I'm way beyond sutent. I notice from reading your profile youre grade 1. Congratulations, as far as getting cancer goes, you just drew the lucky card. They've caught it early, and having had it removed, you're probably in for a long life of stress free monitoring.

Why dont you start your own thread and tell us about your experience and any questions you might have? Remember tho' we're patients not doctors. I guaruntee that on this board you'll find support all the way

lobbyist0724's picture
lobbyist0724
Posts: 236
Joined: Sep 2016

Absolutely! I will share my story for sure.

In fact, I was planning to share the news that the new drug cabometyx is out performing sutent. for the friends here that is not responding to suten, perhaps cabometyx can be a new drug to Try! 

Take care!

Carmen

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