I was close with my father, and I am also a loner.. I feel for you and will keep you in my prayers <3
Can't fix cancer with a band aid!!!!
- Thread starter johnsmit
- Start date
- Status
Thanks for every ones encouraging words and prayers.
The last month or so has had some very positive results.
I started on this immune therapy on Dec 9 .it is called Penbrolizumab, and it is used for melanoma.
I get it every 3 weeks and will be getting my 4th treatment on Feb 13.
The good news is that by Jan 12 or so the swelling had gone down on my tumors and at this time Feb11 my tumor has shrunk by over 50% and there is no more tumor extending into my mouth. I hope this continues.
The last few weeks I have had side effects of stiff and sour mucuals and a little nausea..but they are all tolerable at this time.
I stoped taking most of the other stuff the natural path perceived on his at vice and only take a few vitamins and theracumun. Still stay away from most sugary stuff and
Keep with salads and berrys. Can't say it all a great diet but cut back in most stuff that I like and us not good lol.
It may Still be to early to say it is beaten and won't really know until my next PET/CAT scam.
It will continue to be one day or weeky at a time, but now I can try to be more positive and think on other things.
I'll still be my sane old pessimist knowing they we never know what's around the corner...the positive is that this treatment has work so far,and considering how long it toke me to just get thus treatment from the cancer agency. I am thank full it did work and that I did not have the operation.
I'll take what it has given me and live for a future.t
The last month or so has had some very positive results.
I started on this immune therapy on Dec 9 .it is called Penbrolizumab, and it is used for melanoma.
I get it every 3 weeks and will be getting my 4th treatment on Feb 13.
The good news is that by Jan 12 or so the swelling had gone down on my tumors and at this time Feb11 my tumor has shrunk by over 50% and there is no more tumor extending into my mouth. I hope this continues.
The last few weeks I have had side effects of stiff and sour mucuals and a little nausea..but they are all tolerable at this time.
I stoped taking most of the other stuff the natural path perceived on his at vice and only take a few vitamins and theracumun. Still stay away from most sugary stuff and
Keep with salads and berrys. Can't say it all a great diet but cut back in most stuff that I like and us not good lol.
It may Still be to early to say it is beaten and won't really know until my next PET/CAT scam.
It will continue to be one day or weeky at a time, but now I can try to be more positive and think on other things.
I'll still be my sane old pessimist knowing they we never know what's around the corner...the positive is that this treatment has work so far,and considering how long it toke me to just get thus treatment from the cancer agency. I am thank full it did work and that I did not have the operation.
I'll take what it has given me and live for a future.t
I am so happy to read this news!!! 
congratulations and I will continue my prayers for your continuous recovery!! :love_heart:
congratulations and I will continue my prayers for your continuous recovery!! :love_heart:The side effects have got a little harder to tolerate. I been getting prolonged pain in stiffness in my legs and arm mucuals ,swollen knees and feet and It us effecting my ability to walk properly .Feeling week kneed and have to watch my balance..
I have read some people's comments from UK and Europe who have used the drug back in 2012 and onwards and some people have gone from being in good shape and noble before being on the treatment ,to being bedridden in a few weeks from side effects.. It toke 9 weeks be for I got difficulties and I have to question if the side effects will cause more damage then the cancer.
I have the PET scan booked for March 24 and will find out how well the treatment is doing then.
If this pain and mobility get worse I will have to stop or cut back on the treatment.Not sure how that will effect the progress with the cancer shrinking. Or if I need to look at some other treatment..
The standard for this treatments is to be on it for yrs if the tocisity does not buildup to badly..
I personally don't want yo be taking drugs for yrs and have to keep wondering is this the only thing keeping me a live. And if I stop will it all come back again.
Even though this is not chemo. I sit in the chemo room to get the drug and listen to the other patients talk about how this is their second or third round after their cancer came back after a few yrs...
I have not here may talk about melanoma.. As for my melanoma I have learnt that it is either Spindle cell carcinoma or something call Dermalplatosis.
I have read some people's comments from UK and Europe who have used the drug back in 2012 and onwards and some people have gone from being in good shape and noble before being on the treatment ,to being bedridden in a few weeks from side effects.. It toke 9 weeks be for I got difficulties and I have to question if the side effects will cause more damage then the cancer.
I have the PET scan booked for March 24 and will find out how well the treatment is doing then.
If this pain and mobility get worse I will have to stop or cut back on the treatment.Not sure how that will effect the progress with the cancer shrinking. Or if I need to look at some other treatment..
The standard for this treatments is to be on it for yrs if the tocisity does not buildup to badly..
I personally don't want yo be taking drugs for yrs and have to keep wondering is this the only thing keeping me a live. And if I stop will it all come back again.
Even though this is not chemo. I sit in the chemo room to get the drug and listen to the other patients talk about how this is their second or third round after their cancer came back after a few yrs...
I have not here may talk about melanoma.. As for my melanoma I have learnt that it is either Spindle cell carcinoma or something call Dermalplatosis.
I had some unexpected great news.
No cancer was detected in by my last PET scan.
And the tumors are as gone as they at going to be.
I won't be getting any more immune therapy and I just have to monitor the tumor site and any other changes.
They will check me again with a PET scan in 3 to 4 month if nothing comes up.
Thanks every one for your prayers.
I have my caution about results, and I am still dealing with the side effects triggered by the immune therapy.
But they have lessened a bit. Maybe just another problem that decided to return.
For now I have one major issue off my plate .And I can say my glass seems almost full. At least there is some thing to drink from .☺
No cancer was detected in by my last PET scan.
And the tumors are as gone as they at going to be.
I won't be getting any more immune therapy and I just have to monitor the tumor site and any other changes.
They will check me again with a PET scan in 3 to 4 month if nothing comes up.
Thanks every one for your prayers.
I have my caution about results, and I am still dealing with the side effects triggered by the immune therapy.
But they have lessened a bit. Maybe just another problem that decided to return.
For now I have one major issue off my plate .And I can say my glass seems almost full. At least there is some thing to drink from .☺
Last edited:
Fantastic news johnsmit!!! Really happy for you!!
Positive thoughts and prayer continue!:clap2:
A lesion was discovered in my left lung in April of last year. Within a week, I had seen a medical oncologist, a thoracic surgeon, and had a biopsy con firming that it was cancer. I had three options: Surgery to remove half of my left lung, Proton radiation, or Photon radiation. I first thought I would have the surgery, but after discovering how limited my activities would be do to the lack lung capacity, I decided on Photon therapy. Four visits for measurements, a PET scan, and numerous CAT scans and then I started Therapy. Therapy consisted of 5 appointments for radiation which concluded in the last week of July. Had another PET scan last month and i am totally free of Cancer. Currently, there is only way to beat cancer is with very early discovery and prompt treatment there after.
That's great
I heard proton radiation treatments are the best .Because the can pin point the area better and only radiate that.
Yes you got quick treatment
Was that in Canada ?
It seemed like a long time for me .. fromwait first going to doctor in March 29 2017 and waiting 2 months for dermatologist to waiting another 4 weeks for biopsy and results. Getting it confirmed as cancer, melanoma . And then going to surgeon and oncologist and radiologist radeologist.getting . And basicly rejecting the surgery and radiation was not a real option. I ended up waiting for a PET scan for 4 months. Lucky it had not speed and the tumors was only twice as big , it looked bigger.
I still rejected the sugury. Then I was approved for immune therapy.Which I started on December 9, 2017. By Jan 19 the tumors had stuck 80% and after my 4th treatment the remainder tumors disappeared. So by middle of Feb. there was only scare tissue.
Of course I got some side effects and they stoped any further treatments. I had a PET scan on March 25,2018 and and i was clear of cancer ,as far as reading the scsn csn detetmon.
So for me it has been a one yr from the time i first went to the doctor about this cyse on my chin.
I heard proton radiation treatments are the best .Because the can pin point the area better and only radiate that.
Yes you got quick treatment
Was that in Canada ?
It seemed like a long time for me .. fromwait first going to doctor in March 29 2017 and waiting 2 months for dermatologist to waiting another 4 weeks for biopsy and results. Getting it confirmed as cancer, melanoma . And then going to surgeon and oncologist and radiologist radeologist.getting . And basicly rejecting the surgery and radiation was not a real option. I ended up waiting for a PET scan for 4 months. Lucky it had not speed and the tumors was only twice as big , it looked bigger.
I still rejected the sugury. Then I was approved for immune therapy.Which I started on December 9, 2017. By Jan 19 the tumors had stuck 80% and after my 4th treatment the remainder tumors disappeared. So by middle of Feb. there was only scare tissue.
Of course I got some side effects and they stoped any further treatments. I had a PET scan on March 25,2018 and and i was clear of cancer ,as far as reading the scsn csn detetmon.
So for me it has been a one yr from the time i first went to the doctor about this cyse on my chin.
oh, I am so happy to see so much good news in here!!!!
I have had a hard time checking in because of personal reasons...
...being the following...
I type less than happy news with trembling hands that I am losing my most favourite person in my family and, in the world, most likely by the end of this year
(it is also a big reason why I have been taking limited appointments, FYI: for any of those new friends who have not been able to reach me)
I have had a hard time checking in because of personal reasons...
...being the following...
I type less than happy news with trembling hands that I am losing my most favourite person in my family and, in the world, most likely by the end of this year
(it is also a big reason why I have been taking limited appointments, FYI: for any of those new friends who have not been able to reach me)
It my birthday to day!��. A year ago i did not think i woukd see my 64 yr. I am happy I did.
Went out with friends last night and had dinner ,she has her birthday today too.
I have got over most of the side effects of treatment. Seen a dermatologists to check me over for any another possible cancer ,no issues.And I'll be getting another PET scan in 2 weeks to see if I am still cancer free or as they say NCD. It means "No cancer detected."
I feel good, my energy has come back up,and I am able to walk as fast as I use to.,also the strength in my hands have come back and I can open jars and hold things better again.
The side effects from the treatment were far worse then any think i delt with from having the cancer.. but i knew that could happen.
I have read some reports on the long term effects of the treatment done to group in 2014 and the 3 yr no recourance of cancer is around 50% , which is about 25% of all those treated. Many kept taking the treatment for 2 to 3 yrs.
I am associated with a small sub group of about 93 people, I figure about 10% that had very good response to the treatment with 3 or 4 dosage, but then got sideffects and had to stop treatments. That group continued to have the benefits of no cancer returning .
Of the 93 only 2 had reacurance of cancer , that is 95% rate of succes.
I hope that is how it works out for me..
Of course the biggest fear now is , is it gone?.
The reality is I look at the drugs as as treatment not a cure,and I'll have this anxiety of it returning ,which i have to deal with, and get some counseling .it is all normal to have those feels .No matter what we go through in life we fear most that we will have to do it again and next time it will be worse and we wont make it.
Cancer is a ruff one and it just a reality of living .Once you have had it your prob Going to get it again and in the same area.
The one thing I an thankful for is that I did not have half my chin and jaw removed,and that I held out for an alternative treatment,that worked.
If it does return they can continue on with the treatment again, maybe have to add some other immune theropiesin combination to see that I don't get side effects again.
I will see what the future hold and do my best to get through it . YES probably with the same negative/positive attitude that works for me .but right now I just appreciate the time i have and hope to get out and to do a few things
I put off for so long ,even from be for I had cancer.
One day at a time and still smiling
Thanks every one for your prayers
Went out with friends last night and had dinner ,she has her birthday today too.
I have got over most of the side effects of treatment. Seen a dermatologists to check me over for any another possible cancer ,no issues.And I'll be getting another PET scan in 2 weeks to see if I am still cancer free or as they say NCD. It means "No cancer detected."
I feel good, my energy has come back up,and I am able to walk as fast as I use to.,also the strength in my hands have come back and I can open jars and hold things better again.
The side effects from the treatment were far worse then any think i delt with from having the cancer.. but i knew that could happen.
I have read some reports on the long term effects of the treatment done to group in 2014 and the 3 yr no recourance of cancer is around 50% , which is about 25% of all those treated. Many kept taking the treatment for 2 to 3 yrs.
I am associated with a small sub group of about 93 people, I figure about 10% that had very good response to the treatment with 3 or 4 dosage, but then got sideffects and had to stop treatments. That group continued to have the benefits of no cancer returning .
Of the 93 only 2 had reacurance of cancer , that is 95% rate of succes.
I hope that is how it works out for me..
Of course the biggest fear now is , is it gone?.
The reality is I look at the drugs as as treatment not a cure,and I'll have this anxiety of it returning ,which i have to deal with, and get some counseling .it is all normal to have those feels .No matter what we go through in life we fear most that we will have to do it again and next time it will be worse and we wont make it.
Cancer is a ruff one and it just a reality of living .Once you have had it your prob Going to get it again and in the same area.
The one thing I an thankful for is that I did not have half my chin and jaw removed,and that I held out for an alternative treatment,that worked.
If it does return they can continue on with the treatment again, maybe have to add some other immune theropiesin combination to see that I don't get side effects again.
I will see what the future hold and do my best to get through it . YES probably with the same negative/positive attitude that works for me .but right now I just appreciate the time i have and hope to get out and to do a few things
I put off for so long ,even from be for I had cancer.
One day at a time and still smiling
Thanks every one for your prayers
Last edited:
Thanks all.
I had an other PET scan July 8 everything still ok.
I am living with a few nagging feelings . One is " how long Will it stay away ,and will treatment work as well next time ".
See I don't really considered it cured ,once you have had cancer you kind of now know your One out of 2 that got cancer and you can get some kind of cancer again.
The one consolation is that there are these knew treatment that show great promos, and that brings me to my second feeling .
" How can I help others to know that There is these knew approaches to treating cancer with immune theropy. EVEN THOUGH the doctors don't offer them as first line treatment, they have be used as last resort treatment. Which I think and know is wrong.
The old school doctors still are doing the cut ,burn ,and poison ,which has had it place but also has often been very hard on the patient and caused alotbof suffering .
I know I can't change people's approach to how they want their cancer treated , many people don't ask questions, don't look to find info on alternative treatments,nor do they want to . They Believe the doctor knows best and just want the cancer delt with as soon as possible posiable. And some time itvus the wrong approach and nit a good out come.
Of course every cancer is different and the immune theropy does not work for everyone ,but there are a half a dozen choises and more being available.
People should be properly informed about all the option and able to make a choice.
I my case I made a choise not to have done what they recommended because I did not believe in the result or want to go through some Of the aftermath ,with no assurance I would be cancer free.
I rejected the standard treatment and i really did not know at the time what they would give me as an alternative treatment. They were not very clear and open about that point.
As it turned out they had to apply to see if I was a viable candadate to get the treatment funded. It Turns out I was .My luck .
This probably is the biggest hurdle for anyone with cancer that wants the newer treatment. First would be is saying no to what they are wanting you to do.They say It is your choise . But then they have to offer you the other choises ,and you need some progressive doctors and oncologist that realize that they new theropies are a better option when they work. And they are being used more and more as a first response to , melanoma,breast cancer,lung cancer,prostate cancer,liver cancer, brain cancer and being tried on a number of others with success..
Yes some time it still might be quicker to go for the operation or camp and radiation. And for some people it will work well.For others it won't. And some people are afraid to wait,or they waited too long be for being diagnosed with cancer.
I know cancer is not an easy thing to deal with .I dealt with it my way and was not that's afraid to die from it.
But I admit it still was not easy and i did not give up,I kept trying and hoped for some thing that I could accept as agreement,or showed some results.
In my case the wait was not that long , about 5 months from diagnose of cancer (even though I prob had had it for 8 months or more before the biopsy) till treatment started and and then another 3 and half months till no cancer was detected.of course I also had to go through 3 months of side effects which were more painful and debilitating then the cancer had been .
But I know that with out the success of the treatment I would be terminal .
But of course we all are terminal when it comes to life,we just don't know the termination date. Having cancer or any life threatening disease or illness kind of lets you know that life can end at any time and for any reason.
And we try to do what we can to live our lives and hange on as long as we can. But being afraid of death is not how to live either. If we let go or that fear we can hope to accept birth,life and death as one and the same journey which we don't know where it will go next.
I accept that my experience and way of looking at life is just one of billions people's on this planet and we each have our own unique way of thinking and getting through the abversities that come in to that life.
I hope that my stories and thoughts can help some one ,not necessarily to do as I do but to realize and think of other alternatives when faced with life changing decision.
I had an other PET scan July 8 everything still ok.
I am living with a few nagging feelings . One is " how long Will it stay away ,and will treatment work as well next time ".
See I don't really considered it cured ,once you have had cancer you kind of now know your One out of 2 that got cancer and you can get some kind of cancer again.
The one consolation is that there are these knew treatment that show great promos, and that brings me to my second feeling .
" How can I help others to know that There is these knew approaches to treating cancer with immune theropy. EVEN THOUGH the doctors don't offer them as first line treatment, they have be used as last resort treatment. Which I think and know is wrong.
The old school doctors still are doing the cut ,burn ,and poison ,which has had it place but also has often been very hard on the patient and caused alotbof suffering .
I know I can't change people's approach to how they want their cancer treated , many people don't ask questions, don't look to find info on alternative treatments,nor do they want to . They Believe the doctor knows best and just want the cancer delt with as soon as possible posiable. And some time itvus the wrong approach and nit a good out come.
Of course every cancer is different and the immune theropy does not work for everyone ,but there are a half a dozen choises and more being available.
People should be properly informed about all the option and able to make a choice.
I my case I made a choise not to have done what they recommended because I did not believe in the result or want to go through some Of the aftermath ,with no assurance I would be cancer free.
I rejected the standard treatment and i really did not know at the time what they would give me as an alternative treatment. They were not very clear and open about that point.
As it turned out they had to apply to see if I was a viable candadate to get the treatment funded. It Turns out I was .My luck .
This probably is the biggest hurdle for anyone with cancer that wants the newer treatment. First would be is saying no to what they are wanting you to do.They say It is your choise . But then they have to offer you the other choises ,and you need some progressive doctors and oncologist that realize that they new theropies are a better option when they work. And they are being used more and more as a first response to , melanoma,breast cancer,lung cancer,prostate cancer,liver cancer, brain cancer and being tried on a number of others with success..
Yes some time it still might be quicker to go for the operation or camp and radiation. And for some people it will work well.For others it won't. And some people are afraid to wait,or they waited too long be for being diagnosed with cancer.
I know cancer is not an easy thing to deal with .I dealt with it my way and was not that's afraid to die from it.
But I admit it still was not easy and i did not give up,I kept trying and hoped for some thing that I could accept as agreement,or showed some results.
In my case the wait was not that long , about 5 months from diagnose of cancer (even though I prob had had it for 8 months or more before the biopsy) till treatment started and and then another 3 and half months till no cancer was detected.of course I also had to go through 3 months of side effects which were more painful and debilitating then the cancer had been .
But I know that with out the success of the treatment I would be terminal .
But of course we all are terminal when it comes to life,we just don't know the termination date. Having cancer or any life threatening disease or illness kind of lets you know that life can end at any time and for any reason.
And we try to do what we can to live our lives and hange on as long as we can. But being afraid of death is not how to live either. If we let go or that fear we can hope to accept birth,life and death as one and the same journey which we don't know where it will go next.
I accept that my experience and way of looking at life is just one of billions people's on this planet and we each have our own unique way of thinking and getting through the abversities that come in to that life.
I hope that my stories and thoughts can help some one ,not necessarily to do as I do but to realize and think of other alternatives when faced with life changing decision.
- Status
