Jen from California - Dx 2009

[Bonni Hess]

Dear Jen, I am so very sorry about your increased lung met growth and the diagnosis of a small occipital lobe brain met. Additionally I am extremely upset that your radiation oncologist inexplicably failed/neglected to tell you about your collapsed right lower lobe lung collapse which to me is completely inexcusable!! The collapsed lung lobe probably explains the shortness of breath and difficulty breathing which you had described awhile ago, and it should have been addressed and treated immediately with insertion of a tube to reinflate the collapsed lobe as was done for Brittany with an emergency hospitalization when her lung collapsed following her lung met RFA procedure in Pittsburgh. I agree with Olga and Debbie that Gamma Knife is probably the best treatment approach for your small brain met because resection of an occipital met could jeopardize/impact your vision because of the location. I urge you to pursue Gamma Knife as soon as possible to ensure the best chance of a successful response since it is important to Gamma Knife ASPS mets at the smallest possible size, and ASPS brain mets grow much more rapidly than the more indolent growing mets in other parts of the body. I am personally unfamiliar with neurological radiation oncologists in your area, but if your budget, schedule, and insurance coverage allow, I strongly recommend Dr. Jason Rockhill.at the University of Washington in Seattle who has performed Brittany's three Gamma Knife procedures. Gamma Knife is done in a single treatment on an outpatient basis. It does not require the head to be shaved, but as Debbie said, a small area is shaved where the pins are inserted in several spots to attach the frame to your head. I will be glad to try to answer any questions that you have about the procedure. In the meantime, take care, stay strong, and keep in touch as you are able. Holding you very close in my heart and most caring thoughts and sending special hugs, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Thanks all for your support!

When patients get mets in abdomen/pelvis area like the adrenals, are there usually symptoms? I haven't had my CT scan for abdomen /pelvis in a year, and I hate getting it done because they make u drink the contrast and it makes me feel sick. I should probably schedule that soon, along with the bone scan.

If I was to look at the brain MRI images myself on the computer, would I be able to see a met as small as 3mm? Or would it take a trained radiologist's eye to spot it...

[D.ap]

Hello Jen
I don't think you'd see the 3mm image on brain scan without a doctor doing a stop and print of the MRI.

In reference to abdominal scan :

Schedule it ASAP so as to have a peace of mind

You have lots currently going on so incorporate your doctors help. That's what they need to hear from you as their patient
Love
Debbie

[Bonni Hess]

Hello again dear Jen, Regarding your question about abdominal mets, the small mets are usually not symptomatic as was the case with Brittany's pancreatic, duodenal, and small bowel intussuception mets which were found in her routine three month abdominal/pelvic CT scans seven years ago. As with all mets, you DO NOT want to wait for them to become symptomatic because they need to be found, addressed ,and treated at the smallest possible size to ensure the best chance of a successful outcome. You can request an abdominal/pelvic MRI with IV contrast instead of having the abdominal/pelvic CT with the liquid contrast which makes you feel sick. We requested a switch to abdominal/pelvic MRI's for Brittany during this past year because of our concerns about the amount of radiation she has been exposed to during 14+ years of innumerous scans as well as how sick Brittany became after her CT scans with oral contrast. There has thankfully now been a vast improvement in how Brittany feels following her abdominal/pelvic Clinical Trial scans and she is now able to eat and not be in bed the rest of the day with debilitating nausea and stomach cramping. With the increased disease progression that you have been experiencing, you should be having abdominal/pelvic scans at least every six months and a full body bone scan once a year. I strongly encourage you to schedule and have the abdominal/pelvic scans as soon as possible. Regarding your question about being able to see the 3mm brain met on your Home computer, I suggest that you request to personally review the scan with the radiation oncologist at his office so that you are familiar with what you are looking at. We always do this with Brittany's radiation oncologist following her scans and it is very helpful and informative. If your radiation oncologist is not willing to take the time to do this, I suggest that you find a different radiation oncologist. You have a right to, and need to, personally look at and review all of your scans with your doctors, and then obtain CD copies of the scans to have at Home to review and compare them yourself. Take care dear Jen. With special hugs, caring thoughts, healing wishes, much love, and continued Hope, Bonni

[jenhy168]

Hi Bonni & Debbie,

Thank u for ur advice.

Regarding the abdomen/pelvis MRI w IV contrast vs abdomen/pelvis CT with oral contrast, which one is the more accurate scan?? If I need to put up with the oral contrast resulting in a better/more accurate scan image, I will do it. I just want to do the scan that will be the most accurate / best picture.
If they are both the same I'm quality/accuracy, I might do the MRI if it's less radiation exposure. Does that MRI scan take about 30 minutes? (I do have the cough, so I don't want to ruin the scan by coughing during a long MRI).

I saw the pulmonary doc today and he confirmed that my right lower lobe is collapsed. He suggested that I come back so he can look inside with a camera and suck any blockages out (if there is any) that might be causing the collapse. He doesn't know the cause of the collapse because it may be due to a met blockage or something else, it's hard to know without looking inside. I'm going to dread doing this procedure because I never had anything stuck down my windpipe and it seems quite agonizing and painful. He will need to run this by my oncologist first to see if it's okay to do this.

Do you guys see any complications if he does this? Will it agitate or worsen anything regarding my nodule filled lungs u think? I just don't know if poking around inside with a camera / sucking things out is going to do more harm than good.

I'm still waiting for approval to see a radonc for the brain met. Hopefully it gets approved soon.

Do u know of anyone who has received Cediranib on a compassion based case? I'm not eligible for the trial since I took nexavar before, but I wonder if the drug company can give it to me via compassion.

[jenhy168]

Also got an x ray today and thankfully my left lung isn't collapsed, just my right lower lobe is collapsed. I was very afraid that my left lung collapsed too, maybe just overly paranoid.

My left ribcage is hurting a lot and even when i'm just breathing normal. Must be lots of bruising and swelling from the hard coughs I have all the time.

Has anyone done a lung stent procedure before...?

[Olga]

Jen, CT scan with the contrast is pretty accurate and in your case it is probably a right choice as you are coughing a lot and you need to lie down really still during the MRI scan - versus few moments for CT. Young kids are even medically sedated for the MRI. We asked Dr.Littrup re. accuracy CT with the contrast versus MRI with the contrast and he said about the same.
Do they see a fluid in the pleural space of the partially collapsed lung - sometimes the fluid collects and pushes the lower lobe to collaps - is it the lower one? They usually perform thoracocentesis for a start - it is a procedure to drain the fluid from the space between the lungs and the chest wall (so called the pleural space). If it does not work, they need to look for the cause. Sometimes the mets cause the leak. Although it sounds reasonable if he looked for the cause - I expect you to be sedated to undergo this procedure, it is going to be easier to tolerate.
Why are you asking about the stent. They have to see what is there first and if it can be fixed instead of simply putting the lung stent. They might find the met that is blocking the airway and to cryo or RFA it.
Also you might have a fractured rib if it was in a way of the radiation, became weaker and broke during the hard cough. It would be seen on an X-Ray, have you told them about the local pain.

[D.ap]

Jen

Olga speaks from experience
I concur
Please follow up
The scope is scary but can be managed
I was wondering about stient as well?
Normally associated with arteries and such major blockages

Love and prayers
Debbie

[jenhy168]

So my bronchoscopy with a pulmonary doc that's also a stent specialist is scheduled for Wednesday. I will be put under anesthesia, thank goodness. He will try to see why my lung is collapsed.

Met with my oncologist Dr Chmielowski at ucla today and he said I should consider the NY ESO1 trial.

http://www.ncbi.nlm.nih.gov/pubmed/25538264
http://www.immunedesign.com/clinical-trials/

I have to get my tumor slides from USC first to see if they test positive for a certain protein to see if I'm eligible for this trial. This is an intensive treatment that requires a week of chemo, then some kind of blood transfusion. It would require me to be in the hospital for 3 weeks since I'll have basically no immune system.

[jenhy168]

Note: The pulmonary doc will not be putting in a stent at the time of my bronchoscopy. He will see what's going on first, and if he determines a stent is necessary/makes sense, then a separate appointment will be made. I think a stent will probably not make sense for my case.

~Jen

[D.ap]

Jen

I totally missed your post on Nov 2
How'd the scope go and what did the doctor find ?
Also were you able to get your slides to look for the protein to see if you might join the trial?
Write when able
Love
Debbie

[D.ap]

Hi Jen

I hope today finds you better able to breath better and with more knowledge of why your lung appeared to of collapsed
Thinking of you today and always
Love
Debbie

[jenhy168]

Hi Debbie,

Haven't been able to get the slides yet from USC. I guess it takes awhile.

Broncho went okay, they put me under anesthesia for it, thank goodness. Doc tried to clear blockages, but saw that there was too much scar tissue from the SBRT radiation 3 years ago. So much scarring that it's not possible to re inflate the lung, so I guess I'll just be living with a collapsed right lower lobe lung.

I'm scheduled for my brain MRI and CT simulation planning today at UCLA to prepare for my brain tumor radiation SRS procedure. Doctor is Dr. Kaprealian at UCLA. I consulted with Dr Kaprealian (radonc) and Dr Pouratian (neurosurgeon) a couple weeks ago and they both recommended for me to do SRS radiation to the 3mm tumor in brain (rather than whole brain radiation or open brain surgery). Obviously SRS is the best option. Hopefully they won't find more tumors in the brain today when they do the MRI brain scan with smaller 1mm cuts. (The MRI that I did a month ago where they found the 1 tumor was with 5mm cuts.)

Hope everyone had a nice thanksgiving holiday.

<3

[D.ap]

Hi Jen

Just checking in
I had a good Thanksgiving. How about you ?

I'm sorry the slides are slow to come however
I feel with the brain tumor treatment you need to be sure and also carefull to how the srs treats you before embarking on a trial

I sure hope the MRI left you with good results today.
Can't the obstruction to your airway be treated
some how ? Medicines ?
Let us know please
Great to hear from you

Much love. Hugs
Debbie

[Bonni Hess]

Dear Jen, I am so very sorry about the finding of post SBRT untreatable scar tissue blockage which will heartbreakingly prevent re-inflation of your lung, and am also very sorry about the recent diagnosis of a small brain met. I am however grateful that the brain met was found at a small treatable size and that prompt treatment is being planned to shrink and destroy the met. Is the planned SRS treatment for the brain met the same thing as Gamma Knife? I strongly agree with the decision to not treat the brain met with Whole Brain Radiation Treatment (WBRT) since ASPS is so notoriously radiation resistant and with WBRT not enough radiation can be safely delivered without destroying brain tissue as opposed to what can be done with high dose targeted radiation like Gamma Knife, WBRT can cause severe and permanent short term memory loss, and to my knowledge WBRT has never been successful in destroying existing and preventing the development of new brain mets in ASPS patients.I Hope that your yesterday's more definitive brain MRI went well and that no additional brain mets were found. Are you still receiving the Opdivo PD-1drug, or has this now been discontinued due to apparent disease progression with the diagnosis of your brain met? I am holding you very close in my heart and most special thoughts dear Jen, and will be anxiously awaiting your next update. With deepest caring, special hugs, healing wishes, much love, and continued Hope, Bonni