Jen from California - Dx 2009

[D.ap]

Dang it Jen,

I am so sorry that you need to even deal with this at this time..
That was my grandma reseved explicative on entry
.
This sarcoma does not rest does it?!

And if you wouldn't mind please give us what the report gives in specifics and if you are still on meds?
Is there fluid around your heart as to me even tho I am not a doctor would indicate a blockage?

Hugs
Deb

[jenhy168]

Currently I'm on Opdivo, which is an hour long infusion every 2 weeks. No other meds.

I don't know of any fluid around my heart, but tomorrow I am seeing my radiation oncologist Dr Lee at UCLA, and we will probably look at the scans together and discuss treatment options more in detail.

So is Dr Littrup now at Rhode Island?

[D.ap]

Hi Jen

Outside now

Ie radiation --/Please consult with main doc before going forward with radiation


Ie ablation --I suspect you will need to be at a facility that is all encompassing meaning you will need an additional cardiologist -- heart person to consult with as well if you go ablation road

Please contact folks

Ie docs --in reference to chemo doc Please call ASAP so EVERYONE is aware of the path now and future
Sign the medical releases so every one knows what is going on


Love and hugs

Debbie

[jenhy168]

Thanks Debbie.

Isn't sarcoma more radiation resistant (at least for traditional radiation)? I thought I read that somewhere on this forum before...

[D.ap]

Thanks Debbie.

Isn't sarcoma more radiation resistant (at least for traditional radiation)? I thought I read that somewhere on this forum before...

I'd like to understand rad resistance definition
You bet on the "thanks "

My understanding , as I am not doctor ,is there would have to be an exposure from the radiation that could cause rib and or collateral damage within upper lung muscle /heart bone density Rib area
Can your internal med doc help with your coughing by chance?
Love
Debbie

[Olga]

Jen, to answer to your questions:
- radiation oncologist has only general knowledge re. cryo, he is an expert in radiation treatments not cryo. So he offers what he can do and expresses the general concern re. other treatment modality. To get an exert opinion re. cryo use in this specific location, you should consult and expert himself. I suggest that Dr.Littrup might still be a better choice here - although Dr.Aoun is an experienced dr himself at this point, the cryo close to the hear might need these 5% of the skills that take 10 year to develop.
- yes, Dr.Littrup is now in Providence, it is more expensive there. It should not make any difference for you as this treatment should be covered by the insurance as cryo is a better treatment option in this location from the point of side effects and possible damages, Dr.Littrup will write you a letter. You can also request a consultation with Dr.Suh and discuss the cryo option with him - if he can do it;
- Dr.Littrup successfully treated Ivan's close to the heart lung met and not only Ivan's, most of the interventional radiologists can not do it so this is why the general perception is that it is not done in this location;
- ASPS radiation sensitivity issue - it is not sensitive to the regular radiation therapy but it can be destroyed by the radiosurgery when the dose is very high and it is narrow focused so the target is fried. It can be an effective weapon but it is more damaging to the surrounding lung tissue, esp. keeping in mind that you already have lung fibrosis. Do not forget to mention it when discussing with radiation oncologist.

[jenhy168]

Thx Olga for answering mg questions.

Are there any articles that state that traditional radiation is not that effective to sarcoma met lesions?

[jenhy168]

I just saw Dr. Percy Lee (radiation onco UCLA) and he said that since my largest lesion (about 40mm) is so close to the airway, cryo is not a safe option. I also have a few other larger lesions in the surrounding area. He still suggests 15 radiation treatments.

I think I'm still going to ask my main oncologist to refer me to a cryo doc (hopefully Dr Suh) to see what they say.

I read in one of Amanda's posts that Dr. Littrup doesnt cryo anything larger than 3cm, so I guess that would make sense that cryo is not an option for my 4cm lesion near the airway.

Does anyone know which cryo doctor that Amanda went to for her lung cryo procedure?

Also, I'm still looking for literature / research that evidences that standard radiation treatment is not as effective for sarcoma mets...any help?

Thanks all~
Jen

[D.ap]

I just saw Dr. Percy Lee (radiation onco UCLA) and he said that since my largest lesion (about 40mm) is so close to the airway, cryo is not a safe option. I also have a few other larger lesions in the surrounding area. He still suggests 15 radiation treatments.

*I think I'm still going to ask my main oncologist to refer me to a cryo doc (hopefully Dr Suh) to see what they say.I read in one of Amanda's posts that Dr. Littrup doesnt cryo anything larger than 3cm, so I guess that would make sense that cryo is not an option for my 4cm lesion near the airway.

Does anyone know which cryo doctor that Amanda went to for her lung cryo procedure?

Also, I'm still looking for literature / research that evidences that standard radiation treatment is not as effective for sarcoma mets...any help?

Thanks all~
Jen

Hi Jen

As it is my limited understanding, radiation is meant as a treatment to a given in an area not throughout the whole body and meant to destruct the tumors DNA .
Genetically ASPS because of it slow metabolisium , if you will , isn't affected because radiation isn't residual and ongoing to detroy the SLOW divisions? Its treatment time is limited ? By the time the tumor recovers and mends itself, compared to a more aggressive faster healing dividing cancers that because of their DNA are deemed NOT RADIO RESISTANT , the radiation is not effective? So it , ASPS, effectively waits until the radiation is gone then the body does what it is suppose to and recovers AFTER the radiation is gone. Consequently the sarcoma IS, MOST of the time, not affected by the treatment and is now no better but LESS better as the result of the treatmen
There is much more to understand however with the LIMITED information pertaining to ASPS because we are JUST a few patients for docs and other medical professionals , we are somewhat puzzling to them in the big picture.

This is where I understand the radio resistance is determined . It's thru the COST/BENEFIT termanology . The cost out weights the benefit. Damaged tissue and or organs so the treatment with radiation is deemed radio resistant

Some cancers /sarcomas benefit in different parts of the body with relationship to organs near by, and are very affected by LOCAL radiation positively.

We need to as a group to come up with methods to be able to not damage/weaken our immune systems and not lesson our bodies organs functions so as to aid in our efforts to live , dog gonnit!

This article is good for describing how to overcome radio resistance

Targeted Cancer Therapies May Help Overcome Resistance to Radiation Therapy
http://www2.mdanderson.org/depts/oncolo ... -13-2.html
* my vote

[jenhy168]

Thanks Debbie for your thoroughness.

So this might be a redundant question, but is asps radio resistant to IMRT radiation? To my knowledge, IMRT is more advanced than the standard 3d conformal radiotherapy.

I got approved for 15 treatments of IMRT....

[D.ap]

Hi Jen

I hope this day finds you feeling good.

Redundant or not that's the question .. We are only speculating as we aren't sure if its a tough cookie or it might be the person or persons performing the treatments? 15 treatments would be a lot so in my minds eye I would say that even with the preciseness of the technique and procedure it says a lot about what it takes to begin to destroy the tumor ?.

Have you been able to consult any doctors on cyro?

As Olga had mentioned . You've already had a bad experience with past lung treatments with radiation side effects ?

What dosage in total would you be being prescribed by the 15 treatments?
Is your coughing obstructive as a result of the tumor or is there a possible fluid pressure per say?

Love
Debbie

[Olga]

Jen, ASPS lung mets often respond well to IMRT radiation, but I would consult Dr.Littrup anyways before deciding. Or you have already?

[jenhy168]

I think the dosage is 15 treatments at 40 or 43? I can't remember. Standard 3d conformal radiotherapy is 30 and I think SBRT is at about 53... (Sorry I can't remember the unit of measurement for these numbers.)


I have asked my onco to ask Dr. Suh at UCLA to see if I'd be a candidate for cryo, but Dr. Suh is on vacation until tomorrow. Dr Suh will look at my scans and let my onco know.

The 40mm lesion is blocking my airway which causes me coughing fits and doesn't allow me to breathe in deeply.

For now, I'm scheduled to do IMRT planning on Sept 8.

Prof Rolle's secretary also responded to me yesterday saying she finally received my package of scans and health info. Hopefully, Prof Rolle will respond within this week.

[D.ap]

Jen
Thanks for the information
I'm so sorry to hear of your breathing issue in face of your treatment and what it brings
I hope you get more answers from both doctors soon to help put your mind at ease.
How come your IMRT appointment is so far out ?
Love
Debbie

[jenhy168]

Hi Debbie, IMRT appointment is far out due to work scheduling.

Prof Rolle got back to me and said I'm not eligible for the procedure due to the locations of nodules being too deep in my lungs.

Hope all is doing well.