AFF Cancer Survivors Thread

[LinaLee]

I wonder why she said that..maybe a personal opinion rather than a medical view

If I get a less stern nurse I’ll ask

I got up my courage and the issue is the zinc might interfere with the radiation. The cream if applied before the session would need to be wiped off.
So, best to avoid for now as a barrier not required as I’m being advised to moisturise first think in the morning for radiation in the afternoon.

 

[rogerkambah]

No olive oil , only MooGoo or Cetaphil or QV lotions or something very hi-tech called StrataXRT that is like a gel layer that covers your skin. So far after 4 days, skin is ok but I guess it is early days. Another 11 sessions to go

Hope that your treatment has been going ok.
I'm interested in how it has affected you as I am going to see a radiation oncologist next week with a view to having a persistent metatstatic nodule of cells in my lung treated.
I've already had surgery for a renal tumour and chemo for mets in my lungs. I was off chemo for 2 years before this new nodule appeared.
My medical oncologist mentioned the type of treatment I am to have as SBRT which is fewer doses I believe.
I guess I will find out next week.

 

[LinaLee]

@rogerkambah It went very well surprisingly. Just finished end of last week after three weeks of daily dose to left chest of 42Gy in total. No real after effects that I noticed. Skin was turned brown tho like a serious tan. Used moisturizer three times a day. At the end of second week, had to use some cool fresh aloe to calm things as it turned slightly red and warm but otherwise it resolved. No peeling etc.

It’s all very advance now, I had to take deep breath and hold so it minimizes dose to heart and left descending artery. Lowers my chance of future heart complication they said. I hope so too.

Good luck. Hope it does the trick.

 

[rogerkambah]

@rogerkambah It went very well surprisingly. Just finished end of last week after three weeks of daily dose to left chest of 42Gy in total. No real after effects that I noticed. Skin was turned brown tho like a serious tan. Used moisturizer three times a day. At the end of second week, had to use some cool fresh aloe to calm things as it turned slightly red and warm but otherwise it resolved. No peeling etc.

It’s all very advance now, I had to take deep breath and hold so it minimizes dose to heart and left descending artery. Lowers my chance of future heart complication they said. I hope so too.

Good luck. Hope it does the trick.

Thanks for sharing this with me. Hope you are all fixed now.

 

[LinaLee]

Thanks for sharing this with me. Hope you are all fixed now.

How did you go last week with your RT appointment? Hope it went well.

I guess you could say I’m all fixed now

 

[rogerkambah]

How did you go last week with your RT appointment? Hope it went well.

I guess you could say I’m all fixed now

Wonderful to hear your treatment has worked.
Last week was the initial meeting with the RT onco, having been referred by the medical onco, following the PET scan indication of a single met group of cells in my lung.
Next week I have to see him for a planning session to get positioned, tattooed and learn how to breathe so they can program beam tracking. This is because the lung and hence the met move as one breathes.
On the upside he envisages only 1 session of SBRT using 8 beam positions. Seems quite confident that this will work well, since he says that with the target being in the upper part of the left lobe there are no major structures to work around.
After that it's a case of getting an appointment.

 

[love_the_life]

Wonderful to hear your treatment has worked.
Last week was the initial meeting with the RT onco, having been referred by the medical onco, following the PET scan indication of a single met group of cells in my lung.
Next week I have to see him for a planning session to get positioned, tattooed and learn how to breathe so they can program beam tracking. This is because the lung and hence the met move as one breathes.
On the upside he envisages only 1 session of SBRT using 8 beam positions. Seems quite confident that this will work well, since he says that with the target being in the upper part of the left lobe there are no major structures to work around.
After that it's a case of getting an appointment.

That’s sounding positive RK which is great. You know we worry about you.

 

[LinaLee]

Wonderful to hear your treatment has worked.
Last week was the initial meeting with the RT onco, having been referred by the medical onco, following the PET scan indication of a single met group of cells in my lung.
Next week I have to see him for a planning session to get positioned, tattooed and learn how to breathe so they can program beam tracking. This is because the lung and hence the met move as one breathes.
On the upside he envisages only 1 session of SBRT using 8 beam positions. Seems quite confident that this will work well, since he says that with the target being in the upper part of the left lobe there are no major structures to work around.
After that it's a case of getting an appointment.

Hope you get that appointment soon. And good that only one session required .

 

[rogerkambah]

Today I had the third option.
I've had surgery and chemo previously so today was radiation.
Spent about an hour on the bed so was a bit sore afterwards, especially my head as there didn't seem to be anything cushioning it.
Had 24Gy in one session comprising 8 shots, so now have to wait for another 3 months to see if that fixed 'em.

 

[TheRealTMA]

Today I had the third option.
I've had surgery and chemo previously so today was radiation.
Spent about an hour on the bed so was a bit sore afterwards, especially my head as there didn't seem to be anything cushioning it.
Had 24Gy in one session comprising 8 shots, so now have to wait for another 3 months to see if that fixed 'em.

Good luck!

 

[LinaLee]

Today I had the third option.
I've had surgery and chemo previously so today was radiation.
Spent about an hour on the bed so was a bit sore afterwards, especially my head as there didn't seem to be anything cushioning it.
Had 24Gy in one session comprising 8 shots, so now have to wait for another 3 months to see if that fixed 'em.

That’s good. Was thinking how you went. Fingers crossed it’s done it’s trick

 

[love_the_life]

Today I had the third option.
I've had surgery and chemo previously so today was radiation.
Spent about an hour on the bed so was a bit sore afterwards, especially my head as there didn't seem to be anything cushioning it.
Had 24Gy in one session comprising 8 shots, so now have to wait for another 3 months to see if that fixed 'em.

Thanks for the update RK. Glad to hear it's over so hopefully the radiation has done its job. Roll on three months!

 

[Milboo]

@LinaLee - thanks for sharing your story and subsequent comments. I have just been through the process of finding a sizeable lump and having scans etc. Thankfully I have received an all clear but it was a truly awful week waiting and I’ve actually been really struggling to process the whole experience and the impact of it.

It didn’t help that 2 weeks prior I’d been at an urgent appointment with my dermatologist due to changes detected alongside previous treatment/ excision area for BCC and SCC on my face and had started back on Aldara for that.

 

[LinaLee]

@LinaLee - thanks for sharing your story and subsequent comments. I have just been through the process of finding a sizeable lump and having scans etc. Thankfully I have received an all clear but it was a truly awful week waiting and I’ve actually been really struggling to process the whole experience and the impact of it.

It didn’t help that 2 weeks prior I’d been at an urgent appointment with my dermatologist due to changes detected alongside previous treatment/ excision area for BCC and SCC on my face and had started back on Aldara for that.

I am glad that your worst fears did not come true after all. Yes, that waiting time is the worst I can imagine, the fear of the diagnosis and how bad it can get. All the what-ifs etc.

In my case, I always knew so the waiting was spent planning and getting things ready was how I kept the fear at bay and being in control and cancer was not going to define or defeat me. It is just a phase that I will get through. Getting the result was formality to kick-start the round of setting up appointments with specialists (which I already short-listed from friends and family). I spent the weekend before diagnosis going to open houses cause I was trying to buy a house at the time. Kept myself distracted with living a full life is a good technique. In fact, I kept all those long terms plans going forward, I kept working productively (I was very lucky my bosses were so supportive allowing me to work as much as I could physically manage as they knew me well that work would keep me going and not focused on treatment). So cancer treatment and all the side-effects was wrestled into second place and fitted around all the other things in my life . Went to an auction and put in the winning bid two weeks after surgery still taped up . Commenced and completed house renovations during the last 3 months of my 6 months chemo and moved house the week after chemo finished before carrying on with radiation as the last step of treatment. Went to an interstate conference and drank more alcohol than I should between chemo cycles Things are not the way they were before in many ways, I am still recovering from the after effects of treatment and I have to remember to be kind to myself and being patient with new limitations is my hardest lesson that I have yet to master. I am not expecting things to be always smooth sailing and yes, in the back of my mind the fear of cancer returning is always there. But I am working on not letting it define or limit me. As this thread demonstrates those of us touched by C have shown a high resilience to overcome it in our own ways and using our innate strengths to deal with "#@%* happens" moments

@Milboo Perhaps now you can take a few weeks to not think about the what-ifs but look forward to doing those things you'd promised yourself, You got through that hurdle. Don't look back

"Plan for the worst hope for the best" is advice I have lived with my whole life. It's held up well so far

 

[Pushka]

Accidentally caught up with the Mum of my sons friend who had extensive bowel and bladder surgery almost this time two years ago after chemo. Turned out there was a genetic issue inherited rather like the BRCA gene. So two family members involved. Extensive surgeries for both. But today she had wonderful news. He is doing very very well. He still has paralysis of the arm from the 12 hour surgery but now no more scans or MRIs until next year and some blood tests towards the end of the year. And miracles can happen!

 

[cove]

Looks like Metformin has a carcinogen in it. My cardiologist switched me onto a sugar blocking drug almost 2 years ago.

 

[drross]

Looks like Metformin has a carcinogen in it. My cardiologist switched me onto a sugar blocking drug almost 2 years ago.

Hi Cove. My understanding is that it’s not the metformin but something that some companies mix with it for what ever reason..something called NDMA maybe. And metformin is a great drug..some of the options haven’t been around for as long so the side effects etc are still being discovered. If you’ve been started on forxiga that’s probably an ok option

 

[Buzzard]

I'm off to the RAH this morning to find out if my surgery was successful and therefore cancer free.

 

[VPS]

I'm off to the RAH this morning to find out if my surgery was successful and therefore cancer free.

Good luck

 

[Buzzard]

Overall a good result.
Whilst still detectable, my PSA level has come down. Another test in 3 months. I'm happy.