Sam from Taiwan since 2002 (now 37 years old)

ASPS patients post updates here, including tales of success :)
D.ap
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by D.ap »

Sam
Best wishes for success.
Try if you can to have a morning treatment with your gamma knife treatment as the brain is at its lowest activity levels and studies have shown more success with with radiation because of that inactivity , circadian rhythm cycles .


https://www.cureasps.org/forum/viewtopi ... ian#p13609

Re whole brain radiation
We back in 2015 explored and had a discussion with our radiologist . The benefit / cost discussion .
My understanding is the cost of that treatment in terms of damage out weighs the benefits .

The brain can take only so much of the radiation treatment and a person could ,by using whole brain radiation , over do that limit with little or no benefit .
Will you have your infusion monitored by a medical team ?
Debbie
Olga
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by Olga »

Sam, what are the sizes of the two bigger mets that are planned to be treated - it was my understanding that only one met was big enough to be reliably targeted by the GammaKnife? what does the doctor say re. the overall planned radiation damage volume and the expected steroids use?
Olga
kn0227
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by kn0227 »

Hi, Olga:

The two biggest brain mets are about 0.7cm and 0.5cm.

The doctor said steroid will not be needed regarding to this size and number of brain tumors with Gamma Knife.

My doctor said we can treat the two biggest brain mets with Gamma Knife first and wait 3 months to see if Keytruda will work on the remaining small brain mets(0.2cm).

If Keytruda doesn’t work on me(which we’ll know in 3 months), I’ll change to 「Whole Brain Radiation Therapy + Pazopanib」 to stop my small brain mets growing.

I’m also worried about the pancreatic met (2.6cm). But my first priority now should be the brain mets, right?

Best,
Sam
Olga
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by Olga »

All the current clinical trials combining K+SBRT are done K first and SBRT shortly after - and I believe they think it is very important to schedule it very soon after, some say the next day, some 2-3 days, so just try to get it closer to K day as possible. If the treatment is done in one fraction then it is usually the next day:
https://clinicaltrials.gov/ct2/show/NCT ... ses&rank=1
https://clinicaltrials.gov/ct2/show/NCT ... ses&rank=2
the reason I am looking at the clinical trials schedule is that they are trying to find the most optimal schedule and the timing is of essence here when immune system is involved, so they design the clinical trial based on the latest data that is available. So probably the first one you have Sept 4 is better than the second choice? or you can move the second one to the day after the second K dose?
The pancreatic met and other mets do not need to be treated additionally as of now as you will be hoping for the systemic K response
Olga
kn0227
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by kn0227 »

Hi, Olga:

It has been a week since my first Keytruda infusion. However, I have two obvious side effects here:(1) My right lung has inflammation and I am having blood stained sputum. (2) I am having hematochezia.

I am ok in the ER now. The doctor just gave me antibiotics and hemostacic agent, they haven’t provided steroid yet.

Does it mean Keytruda doesn’t fit me because of the above side effects? Will it get better or worse with the 2nd infusion? Should I keep using Keytruda?

Best,
Sam
Last edited by kn0227 on Thu Sep 05, 2019 9:22 pm, edited 1 time in total.
Olga
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by Olga »

Hi Sam, I am so sorry to hear re. this serious side effects appearing so soon.
When did it start?
Why have they decided to start antibiotics - any signs of infection?
Blood in the stool might be a sign of the colitis which is one of the frequent ICI side effects and blood in the sputum (haemoptysis) is also frequent Keytruda side effects. Have they tested the sputum for any infection signs? Do they see the source of bleeding on the lung X-Ray? was the colonoscopy done to see the source of the hematochezia? Perhaps the blood vessels bleeding and can be coagulated?
there is an article that they might want to review
https://www.ncbi.nlm.nih.gov/pubmed/31078463
Olga
Olga
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by Olga »

In general it depends on the severity of the side effects. If the hemoptysi and hematochezia are insignificant (grade 1 or 2 severity), they may try to fix the bleeding locally coagulating it or even applying the radiosurgery to a bleeding spot or it may correct itself and you can continue with the drug. You still have a lot of time before of the next treatment to see how it goes.
Olga
kn0227
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by kn0227 »

When serous side effects happen to a person, it doesn’t mean that Kaytruda will work on the tumors of this person, right?

Best,
Sam
Olga
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by Olga »

Sam, I would say in your case this is probably how Keytruda works...I am not sure, but it looks like you are having an unusually active response to Keytruda and the immune cells massively attacked the lung met so it started to bleed, there are few cases like this with lung cancer patients. They would probably be able to review your previous lung CT, compare to the one you are having after the bleeding started and see if the bleeding is from the attacked lung met. I am not sure re. hematochezia though. Is the blood in your stool bright red and kind of dark? Sometimes the blood from the same bleeding blood vessel gets into the stomach...
Antibiotics might reduce its efficacy though so they have to have a reason to give them to you
Olga
kn0227
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by kn0227 »

Hi, Olga:

After staying in the hospital and did some blood tests and CT scans. The doctor diagnosed my situation as pneumonia rather than the side effects of Keytruda. Because after they provided me with antibiotics for 3 days, my blood stained sputum and coughing improved a lot. And as for the hematochezia, it was because I took some dragon fruit and beetroot on that day.

Now I am pretty worried if I will have systemic Keytruda response! What shall be my next steps if Keytruda doesn't work on me? (Keytruda + TKI drug?) Shall I consider going to Dr.Walz for pancreas met and Dr.Rolle's successor for lung mets? What's the best solution for the expected coming new brain mets?

Best,
Sam
Olga
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by Olga »

Sam, I am glad that your side effects turned out by being not that awful as it appeared earlier. Since you have only took the antibiotics for 3 days, the damage to the immune system and microbiome should not be that significant and till the next Keytruda dose you should be good although you might have a delay in response. Every Keytruda dose is a fresh start. Are you still planning to have a radiosurgery for the brain mets or you are going to wait till the next scan?
Olga
kn0227
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by kn0227 »

Hi, Olga:

I started my first Keytruda on 8/30 and I did the Gamma Knife on 9/4 for brain mets. And I started to take antibiotics on 9/5 even till now since my lung (pneumonia) hasn't fully recovered yet. But I think I'll stop the antibiotics by my 2nd Keytruda.

Best,
Sam
kn0227
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Location: Taiwan

Re: Sam from Taiwan since 2002 (now 37 years old)

Post by kn0227 »

Hi, Olga:

In addition to the radiosurgery for my brain mets on 9/4. What else can I do to increase the chances for Keytruda to response to my tumors? I still have a pancreatic tail tumor and some lung mets. Shall I do the radiosurgery for the pancreatic tail tumor and lung mets?

Best,
Sam
Olga
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by Olga »

I think you need to wait with any interventions now till the next scan to see if there is any sign of response to Keytruda because it does not make sense to perform anything in order to stimulate the tumor specific immune response if we do not know how long does it take for the immune system to recover from the antibiotics. What are the signs of incomplete recovery from the pneumonia?
Olga
kn0227
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Re: Sam from Taiwan since 2002 (now 37 years old)

Post by kn0227 »

Hi, Olga:

The signs of incomplete recovery from the pneumonia are still a little coughing and a little blood stained sputum. But I'm getting better and better. Hope the antibiotics wouldn't hurt my immune system too much. And hope Keytruda can have responses since I'll stop the antibiotics by my 2nd dose of Keytruda.

Best,
Sam
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