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Radiotherapy for OPD-Oligoprogressive disease

Lulu4545 profile image
14 Replies

Hi to all, I wish you all a happy new year!Had my last PET and sadly I have one oligoprogressing lesion. Last May 2022 I had 2 or 3 hypermetabolic tumors (SUV 3,7-4,5 and 1,9 - September 2022 SUV 2,9-5 and 1,9). These weren't new tumors but they had kind of disapeared for 2 years. I had been NEAD for almost 2 years. I today have 3 hypermetabolic tumors (SUV 2,8-8,2 and 2,4). None of them has grown and none of them are painful. The onc says only the one at 8,2 vs 5 is progressive, the other 2 are stable. She suggests two options: stay on the same treatment and have anothetr PET in 3 months to see or BETTER stay on the same treatment and have some radiations on the one progressing 8,2 to zap it. I was just wondering if anyone has been in this situation and what options were offered. Love to all . Lucy

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Lulu4545
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14 Replies
jersey-jazz profile image
jersey-jazz

Dear Lulu------Where are these pesky things? This is my very opinionated, unprofessional advice. Don't go with radiation unless it is pinpointed. I've had three microwave ablations in my liver with complete success, so far. Are you UK or Us?

Lulu4545 profile image
Lulu4545 in reply to jersey-jazz

Hi Jersey-jazz,Thanks a lot for your help.

I live in France. I don't know yet what kind of radiations they'll be offering. Onc just said radiations on the hypermetabolic lesion in my L3 bone.

If it was a success in your liver, why do not recommend radiations?

I've read it can fragilize the bone that can then break. Yet this met is osteocondensing which I understand means it's not weakened by the met.

Love

Lucie

jersey-jazz profile image
jersey-jazz in reply to Lulu4545

Dear Lulu----I misspoke. I was putting down radiation that seems indiscriminate. In January 2016, which is not that long ago, I had just had surgery of both my cancerous breasts, a couple of lymph nodes on left and twelve cancerous nodes on right. I also had a port. I was being treated with chemo and targeted therapy. Back in November,2015, before the surgery, I had seen the young arrogant doctor to discuss a type of targeted radiation that occurs while being on the operating table. He had told me that we would discuss all that after my surgery! Then in the January, weeks after surgery, the doctor was trying to tattoo me for radiation treatment all across that area, buckshot style. Something snapped in me. My girlfriend was with me. She is out there and maybe she gave me the power to do and say the following. I slammed down my arms which he had made me put up. I stood up and told him I was having nothing of the kind, that my body was beautiful, I was still sexually active and I did not want my beautiful body defaced or nuked! I put my coat back on and marched out. It was a turning point in my life. It had freed something in me. I had finally stood up for myself and have not stopped yet.

My note to you is a little twisted up but it is about three in the morning and I can't sleep.

Norma1959 profile image
Norma1959

hi,

I have never heard the term oligoprogressive .? But I’m thinking it’s oligmetastatic disease that’s progressing ? If that’s the case , I was diagnosed with one lesion on my spine in 2019 . I got radiation on that lesion ( cyber knife ) and it’s scelerotic (sp) . It’s a targeted SBRT and it was done over 3 sessions and I had no side effects from it . It was not for pain as I had no pain , it was to eradicate it .

Lulu4545 profile image
Lulu4545 in reply to Norma1959

Hi Norma,Thanks for sharing your experience.

Oligoprogressive is when you had widespread metastatic disease that was under control/stable/NEAD after systemic treatment, and that is progressive on less than 5 lesions. There is currently a trial called AVATAR on this topic.

The idea is to try to stay as long as possible on the same line of therapy by trying to zap the progressive lesions with radiotherapy.

I don't know what kind of therapy yet.

It's not really the same situation as you.

How are you doing today?

Lovexxx

Lucie

Norma1959 profile image
Norma1959 in reply to Lulu4545

Thanks for that explanation I’ll look that up. The first time I had breast cancer in 2012 ,I had radiation after chemo and lumpectomy . It was not targeted it was to mop up any stray cancer … that was the explanation I was given at the time . This time it was to eradicate the lesion so I would definitely opt for this if you could .

I’m good thanks

My cancer changed status in 2019 and I’m now her 2 positive as well as estrogen positive . I’m stable , that’s as good as it gets . My oncologist will never say NED 😡his opinion is once you have Mets you will always have cancer floating around somewhere so Treatment for life .

It’s not too bad Herceptin/ Perjeta every 3 weeks and zometa for bones every 12 weeks and Letrozole every day for the estrogen bit .

Good luck with your next treatment

NShaft profile image
NShaft

I was in this exact situation in November. We decided to zap the pesky spots (I had two). The radiation was over a course of 3 days and I had few side effects that lasted a few days.

Whaat profile image
Whaat

I was diagnosed in April 2019 with oligometastatic disease, one tumor on the T10. Had 5 SBRT sessions, letrozole, Ibrance and Xgeva. Was Nead for two and a half years . In Sept 2022 it reoccurred in the same spot and had 3 more SBRT sessions and changed from Ibrance to Verzenio.

Lulu4545 profile image
Lulu4545 in reply to Whaat

Thanks a lot for sharing. I thought it wasn't possible to have radiations twice on the same spot.Did you have any side effects?

Whaat profile image
Whaat in reply to Lulu4545

So did I. Actually my radiation oncologist felt that the first 5 sessions that were done by another radiation oncologist wasn't aggressive enough. The side effects on the last 3 sessions were very few in comparison to the first 5. It felt like my esophagus was fried after the first go around. So my new oncologist took extra care so that would not happen again. I think she is excellent and have a lot of confidence in her.

Winter-Flowers profile image
Winter-Flowers

I had ratiation and it zapped out and went back to being NED...no side effects other than a little tired.100% recommended from my experience.

Lulu4545 profile image
Lulu4545

Thanks a lot for sharing. What was your first metastatic diagnosis?

Lovexxx

Lucie

NPmary profile image
NPmary

If it were me l would talk to the radiation physician and ask if the treatment is curative, will affect progression is palliative, and what are possible side effects? I did get radiation therapy to bony mets because it was so painful. I knew the radiation was palliative not curative (it did help the pain). I have lived with colon and bladder side effects.Wish you the best with treatments and decision making. 🌺

Jenniferp2122 profile image
Jenniferp2122

can anyone share any updates regarding this topic? My dad was NED on Ibrance lupron and letrozole for approx 10 months and then 3 pesky lesions started coming back in his soft tissue of chest wall. The highest SUV max 5.6 the other two SUV max was 1.3 and 2.3. Oncologist recommended staying on treatment and re scanning in early September. His scan from July 5 showed this. Tumor markers in normal range as of now

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