George From China - Dx 2007

[Jorge]

We had few cases with the brain mets to the skull (bone) or to the area just under or even to the soft tissue of the skull (muscles) on the outside. I would suggest to pursue the resection to get that tissue analyzed, the surgery should not be that difficult.

From the MRI films, can't see an abnormal in the skull (bone). The met is not outside the skull either. Just see a thick line (~8mm long, 2 mm wide) from the skull or the soft tissue under the skull to the brain. If it's brain mets, usually it wouldn't cause a headache. But George feels a headache (very close to that position) which has become more severe since a few days ago.
I read about some Meningeal metastasis cases of lung cancer, the sympton is the same as brain met but just can't find anything in MRI! What worst thing is there is no much efficient method to treat it (lung cancer patient can have WBR but the efficiency rate is low). A medcine that can go through the BBB seems to be the only way.

Another problem found in the MRI yesterday, actually 2 problems. 1. there are maybe 3 new brain mets, the biggest one is ~5mm. But the doctor is not sure of it because they're very small. 2. the 2 brain mets treated by Gama Knife in August 8th are bigger than the MRI done in Sept 5. Can it be the swelling after the Gama Knife? I don't think it's because of the MRI resolution (8mm) because George also feels headache in this position.

I will go to see the Gama Knife doctor today and maybe an neurosurgon as well. Any inputs are warmly welcome and much appreciated!

[Jorge]

Lynette and George

Olga has a great suggestion. That way it will be removed and analyzed and you won't second guess what it is and isn't
Olga , is rebound growth limited to the lungs after removal of the lung mets in Germany ?
Stay strong you both
Many hugs coming your way.
Debbie

Thank you Debbie.
We have the same question "is rebound growth limited to the lungs after removal of the lung mets in Germany" although we believe removing the lung mets are really necessary (with the wish of slowing down the growth of mets in the brain). Or is it because the immune system degrades after the surgery?

Thank you Olga for your always professional opinion.

[D.ap]

Lynette and George

I also wanted to review ALL that you guys have been through this year, 2013.
Gamma knife, laser surgery and some TKI's. Have I left anything out?

With the brain MRI image could it be edema as a result of the sugeries to the brain that hasn't yet healed, a side effect of the TKI sutent or pazonib?
The headache started when..

On another note, how is Georges cough ? Is he coughing regularly or just sometimes?
Just some thoughts..

You are in our thoughts and prayers

Debbie

[D.ap]

PS I agree 100% that the lung tumors had to be removed.

[Olga]

We did not observe any typical rebound growth after removal of the lung mets in Germany, some people had some new events soon after the surgery, some not. Ivan's mets always had about the same rate of growth regardless of the surgery. The first follow up lungs CT scan after the surgery in Germany would usually state the progression in both number and size but since Dr.Rolle would always treat much more mets than it was visible on a pre-op CT and most of the smaller ones that were 2 mm would became 4-5 mm necrotic tissue balls so the overall picture would def. appear as a progression which it was actually not. The contralateral lung's mets would usually very slowly grow at the same rate as before of the surgery. The surgical stress does increase the pro-angiogenic, inflammation and growth factors but on the other hand decrease in a overall tumor load decreases some of these in return so it is a question of balance which is unknown.

I found some article on the Pubmed
http://www.ncbi.nlm.nih.gov/pubmed/23267929
with the discussion re. meningeal mets Dx:

"Meningeal metastasis frequently causes symptoms associated with intracranial hypertension. Gadolinium-enhanced magnetic resonance imaging and cerebrospinal fluid cytology were useful for the diagnosis of meningeal metastasis."

- George's headache might be caused by the intracranial hypertension;

- Was the brain MRI done with the contrast (Gadolinium-enhanced magnetic resonance imaging)?

- Cerebrospinal fluid cytology??

Also may be double CT without/with the contrast would be helpful in distinguishing the treated scars with the inflammation versus growing mets with the functioning blood supply. Brain surgery was very easy for Ivan and in some cases probably the definite resection still has its advantages versus a radiosurgery although the complications after the brain surgery might be severe if happen.
Now you can discuss that with the docs.

[Jorge]

Hi all, thank you for your care.
I just came back from the hospital. Maybe it's not so bad as we were told yesterday.
I went to the Gamma Knife doctor and the neurosurgeon. They both think the thick line doesn't look like a met, but more like a vessel.
The 2 of 3 new mets can be seen in the MRI done in Aug 7, 2 vaguely spots. But the Gama Knife doctor can't be sure they're mets because they small and can't be excluded from vessel. He can only confirm it now as they grow up.
And the 2 treated mets which look bigger now, he thinks that's because of the necrosis. The mets just start to necrosis 2 month after the Gama Knife.
Regarding the headache, he holds the same opinion as Olga. He consider it's due to the intracranial hypertension and advice to follow up closely.

However, George still need to have a Gamma Knife tomorrow for the 3 small new mets. We also ask to check for any possible reason that cause the headache.

Wish us good luck--no other new mets found tomorrow (the MRI to locate the mets for Gama Knife is more accurate).

[Jorge]

Hi Olga,
George's MRI is always done with the contrast. But as I know from some anecdotal update from the lung cancer patients, MRI with contrast still can't diagnosis meningeal metastasis. Their doctors also suggest cerebrospinal fluid cytology. I will consider it later if the sympton gets heavier. For now, there is obvious swelling so there are intracranial hypertension in some degree. It will affect the diagnosis.

Thank you so much for sharing the valuable and professional opinions.

Lynette

[D.ap]

Lynette and George,

Prayers and well wishes always coming your way.

Write only when the time is good for you.
Love
Debbie

[Jorge]

To reply to some missed questions.

Olga, I agree with you on the neurosurgery--for bigger brain met (>1cm), neurosurgery is better. The met can definately disappear right after the surgery. But if treated by Gama Knife, it takes more than 1 year to absorb it with the risk of revival.
But in George's case, there are multiple mets without obvious symptom. It doesn't meet the nerosurgery criterion here. The neurosurgon wouldn't perform a suegery to him.

Debbie,
The brain progress is very aggressive on George. The treatments he had since last Sept: Gama Knife(brain)--> Cryoablation-->Gama Knife (lung) (definately wrong)-->Gama Knife (brain)-->TKI-->thoracotomy-->TKI-->Gama Knife (brain)-->TKI--> thoracotomy-->TKI->now Gama Knife (brain)
We wrote to ask Dr. Rolle about his cough. Dr. Rolle said it's because of postoperative irritation of the pleura. He suggested "try inhalation with salt, drink a lot and take codein against coughing for one or even two or three weeks. This irritation will then slowly go away."
The doctor wouldn't give codeine for more than 3 days at one time, in case of addiction. So George can only take codeine at times. However, he's much better now and don't need the codeine.

We don't know what to do next to control the brain mets. Cediranib and Pazopanib can't work to stop the brain mets, neither Sutent on other ASPS patients. Maybe Cabozantinib/XL184/Comtriq, as it targets at c-MET and VEGFR-2 and to inhibit c-MET can stop new mets from emerging? I know the BBB issue. But what choice do we have?

[D.ap]

Lynette and George

So good to hear from you. How is George feeling after his procedure ? How are his headaches?
I hope the swelling is going down

So as I understand it George has had 4 different incidents with brain mets since last September ?
You guys have discontinued TKIs at this time ?
When you have gamma knife surgery do the doctors prescribe steroids after wards ?

How are you doing?
Write when you can

Love
Debbie

[Jorge]

Hello, my dear friends.

I have some good news to update. George had lung CT last Sunday--there is still no new mets as to the radiologist. The scars/holes of the right lung which had laser surgery in mid Jun this year is much smaller--the lung looks much more clear. There are many big scars in the left lung, and some hydrothorax (maybe 200~300ML).

He also had a brain MRI this Wednesday--the mets treated by Gama knife is smaller and the report doesn't mention new mets. The MRI was done with the same resolution (actually it is 3mm) as the Gama Knife did in Oct, so I compare the films carefully--only one suspecious new met but can't be sure as it's close to the skull and maybe it's just an vessel section.

Good luck to everyone too.
Lynette

[D.ap]

Lynette and George

Great news! Thanks so much for the update
Much love
Debbie

[Ivan]

Awesome news! I'm glad to see your very active approach to treatment paying off. Please send Jorge my regards

[D.ap]

Ps
We are all holding out for the unknown reading on the scan as a vessel and holding tight to that belief

[Jorge]

Awesome news! I'm glad to see your very active approach to treatment paying off. Please send Jorge my regards

Ivan,
Thank you from George.
I just know it's what he has to do to live longer