Jen from California - Dx 2009

[jenhy168]

I already have access to Cabozatinib so that's probably the drug i'm going with after I stop anlotinib. Given that it's not ICI, I guess surgery would be fine since there's no known synergy between cabozatinib and sbrt.

[Olga]

Jen, my point was that there is a good chance that any ICI would have synergy with the SBRT, and since you have the team ready to SBRT yor spinal met, if you could get ICI with that - it would be a good try to make your immune system to recognize the tumors. It might be pretty difficult to get the radiologist to treat some met that does not represent an immediate danger otherwise, so you could you this. You could contact Opdivo maker and try to get it off label. It was done by our people here living in US, by the request of their oncologist the drug was provided free of charge to try.

[D.ap]

Hi Jen
maybe not Cabozatinib too soon after surgery ?
It can impare healing . After surgery

L

[arojussi]

There is a simple reason why I push for immunotherapy. If immunesystem learns to recognise asps long lasting in theory even permanent response can be achieved. Whit tki responses last for few moths to few years. Immunotherapy sometimes brings patient back from hospice. Yes you already tried immunotherapy, but as I said there is several ways to increase response rate.

[jenhy168]

Hi Jen
maybe not Cabozatinib too soon after surgery ?
It can impare healing . After surgery

L

Hi Debbie - Yes we know. I would need 30 days in between before starting cabo

[Ivan]

Pretty simple for the diet Jen. Eat lots of different fruits and veggies like 5 to 10 different kinds per meal. That should be good for microbiome abundance. And not the same 5 to 10 for every meal either. Variety is key.

[jenhy168]

Pretty simple for the diet Jen. Eat lots of different fruits and veggies like 5 to 10 different kinds per meal. That should be good for microbiome abundance. And not the same 5 to 10 for every meal either. Variety is key.

Got it thanks Ivan

[D.ap]

Hi Jen
I was thinking and reading about IBD, not unlike your IBS,

https://www.cureasps.org/forum/viewtopi ... 701#p13528

and how it accounts for a percentage of some sarcomas small intestines tumors .:/

https://www.ncbi.nlm.nih.gov/pubmed/3459944/

Not trying to scare you but give you a heads up .

This was an article that was particularly interesting as it talks of radiation , antibotics being a possible factor.

It is currently accepted that a number of bacterial factors interact with the immune system in order for inflammation to occur, and there has been a recent shift in thinking toward the concept of dysbiosis (microbiota disequilibrium); therefore, the role of microbiota in IBD will be discussed to raise awareness about microbiota therapies and to underscore the importance of antibiotic stewardship in the prevention of antibiotic-induced microbiome dysbiosis.3,4

It also talks of being of Asian persuasion upping the chances .

https://www.uspharmacist.com/article/sm ... -dysbiosis

Hope all is well with you .

Love

[D.ap]

Jen
Going to post in diet and lifestyles section
On dysbiosis-

https://www.healthline.com/health/diges ... plications

[D.ap]

https://www.cureasps.org/forum/viewtopi ... 709#p13537

[jenhy168]

Hi Debbie,
Recap - I've been on the anlotinib clinical trial since late December 2017, so I've been on it for over a year. Last CT shows overall 'stable' but they found some new mets in my glutes that are subcutaneous or maybe in muscle.

---
Upset Stomach:
I get upset stomach or IBS whenever I take my anlotinib treatment pills, but when I'm off it...I'm basically back to 'normal'. While taking the pills, there are some worse days and some better days...it really just varies. But after I'm off the pill, literally the day after when I'm on my 1 week break cycle, i'm better. So i'm thinking the upset stomach issue is caused by the drug as a side effect..

Also, wouldn't my abdominal CT show if I have any mets or whatever in my intestines? I get abdominal pelvis CT with contrast every 3 mos along with my chest CT.

----
HEART ECHO
On another note, got a heart echo and results says i'm normal. My onco said echos aren't that great in determining mets or tumor in the heart, but it can show if there's anything floating around in the heart. I know technically a heart MRI is better, but I just didn't want to go through another scan if I don't really have to.

My heart echo results are below....let me know if you see anything concerning. I haven't met with my onco yet to discuss results. Thanks guys~


FINDINGS:
Left Ventricle: The left ventricular size is normal. Left ventricular wall thickness is normal. Normal LV regional wall motion. Left ventricular ejection fraction is approximately 55 to 60%. Normal LV diastolic function. Left ventricle global
longitudinal strain is negative 16.4%. MV deceleration time is 261 msec.
MV E velocity is 0.45 m/s. MV A velocity is 0.34 m/s. E/A ratio is 1.34.
Lateral e' velocity is 9.2 cm/s. Medial e' velocity is 6.8 cm/s.
Lateral E/e' ratio is 4.9. Medial E/e' ratio is 6.7. Averaged E/e' ratio is 5.7.
Left Atrium: The left atrium is normal in size. The LA volume (Biplane method) is 25.9 ml. The LA Volume index is 17.9 ml/m².
Right Atrium: The right atrium is normal in size. The RA Volume index is 13.4 ml/m².
Right Ventricle: The right ventricle is not well visualized. The right ventricular size is normal. Global RV systolic function is normal. TAPSE is 16.0 mm. The RV free wall tissue Doppler S' wave measures 10.20 cm/s. The right ventricle basal diameter
measures 26 mm. The right ventricle mid cavity measures 18 mm.
Mitral Valve: The anterior and posterior leaflets are mildly thickened and/or calcified. Trace mitral valve regurgitation.
Aortic Valve: The aortic valve appears trileaflet. No evidence of aortic valve regurgitation. The LVOT velocity is 0.59 m/s. The peak aortic valve velocity is 0.91 m/s.
Tricuspid Valve: The tricuspid valve appears normal in structure. Mild tricuspid regurgitation is present. The peak velocity of TR is 2.11 m/s.
Pulmonic Valve: The pulmonic valve was not well visualized. No indication of pulmonary valve regurgitation. No evidence of pulmonary valve stenosis.
Pericardium: There is no pericardial effusion.
Aorta: The aortic root size is normal. The sinus of Valsalva measures 26 mm. The proximal ascending aorta measures 29 mm.
Pulmonary Artery: The calculated pulmonary artery pressure (or right ventricular systolic pressure) is 21 mmHg, if the right atrial pressure is 3 mmHg. Normal PA systolic pressure.
IVC: Normal inferior vena cava in diameter. There is greater than 50% collapse of the IVC during respiration. Normal right atrial pressure.

IMPRESSION:
1. Normal left ventricular size.
2. Left ventricular ejection fraction is approximately 55 to 60%.
3. Normal LV diastolic function.
4. There is no significant valvular dysfunction.
5. Compared to prior study on 11/30/2017, there are no significant changes.

Thank you~ Jen

[D.ap]

Hi Jen
I’m not knowledgeable to the heart report .
In reference to the CT finding Lower intestinal tumors , Tom and Kathy had a heck of a time finding Toms sarcoma.

https://www.cureasps.org/forum/viewtopi ... =135#p6709

Bonni how was Brittany’s duodenum tumor found ?

[jenhy168]

Hi Debbie,

From what I just read in those posts it seems that there was increased pain and / or intestinal bleeding that led to the finding of intestinal mets? Am I correct?

So are you saying it's difficult to identify or find mets/tumors just via Abdominal / pelvic CT with contrast?

[D.ap]

Hi Jen
My understanding is yes it’s hard to find generally .
I’m not trying to worry you I hope you understand ..

It can cause anemia , pain , weight loss well before it can be found .

I believe Brittany’s was found by an CT then MRI.
I believe the Hess’s are celebrating Brittany’s birthday today. :)

I think I found the write up about Brittany I think .

As Bonni had explained that there had been a ncbi report made available .:)


https://www.academia.edu/18207169/Duode ... rt_sarcoma
I know she will respond when she is available .

[Olga]

Jen, I would say that since your upset stomach symptoms are firmly tied to being on anlotinib and are not present when you are off it, I would not worry about the possible abdominal mets.