CyberKnife Patient Support Group

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icbn
Registered Member

Date Joined Aug 2006
Total Posts : 6

Posted 11/2/2006 10:42 AM (GMT -8)

I had a PET/CT Scan of yesterday, 11/01/06, after having Cyberknife treatment ending 09/26/06. I thought it was too soon to get accurate results. Hopefully, I was right.

The Cyberknife was to treat the Subcarinal Lymph nodes. I had my left lung and primary tumor removed 09/04/05 and Radiation for the R4 Mediastintal Lymph node. There was a Complete Response to the R4 seen in 07/06/06 scan and remains without any hypermetabolic activity. It was however on this scan that the Subcarinal lit up.

The Pet scan showed a slight increase in SUV uptake from 8.3 to 9.5 now. The CT showed an increase to 3.0cm x 2.1 from 2.7 cm x 2.2. All previous findings were based on a 07/06/06 Pet/CT scan.

Is this possibly still hot, scarred or whatever from the Cyberknife treatment? Also, I recall that regular radiation keeps working on the tumor for several months after treatment. Is this true of Cyberknife as well?

Some Hypermetabolic activity was seen in the muscle medial of the left Glenoid with an SUV of 4.3 but with no discrete mass seen. However, this is the area I was shot in 1969 by a bunch of angry communist. It flares up from time to time.

There was also a weak hypermetabolic , SUV of 2.6, in the lymph node behind the right submandibular gland. The size of less than 1 cm has not changed from the previous PET scan, but there was no Hypermetabolic activity then.

I had a Bone Scan on 10/27/06 which was clear. Could the radioactive stuff I took interfered with the Pet/CT scan?

I have also had chemo from August 15th and on-going. The chemo consist if 1795 ml of Gemzar 3 wks/off 1 week, 100 Ml of Avastin every other week and 250 mg of Tarceva daily.

If all this, heavy dosages of chemo and cyberknife, hasn't killed it, I'm toast.

55 male, married 34 years, 3 adult children.
7/30/05 Heart Attack/ Stent inserted/ put on Plavix
8/10/05 Plavix caused blood when coughing
8/14/05 Xrays/CT San reveal spot
8/16/05 Given CScan results enroute to Mother's funeral
8/26/05 Bronchoscope confirms NSCLC
9/7/05 Left Lung removed
9/1/05 Pathology found Two Lymph Nodes w/cancer Stage IIIA
10/17/05 PET Scan revealed 1 additional Lymph Node fired up.
10/24/05 Started Carboplatin & Taxotere 1x week for 12 wks (skip 1 wk every 3rd wk)
12/22/05 PET/CT Scan
12/27/05 Pet/CT Scan Lymph Node in mediastinum grew. Chemo stopped.
1/3/06 Radiation started
3/06/06 Radiation ended; 37 treatments
3/31/06 PET/CT Scan
4/7/06 ONC said Lymph Node SUV shrunk from 12 to 6.5. Still 2 cm in size. A slight glimmer showed in the Subcarinal area but radiologist did not feel the need to report it at this time.
7/6/06: CT Scan done at VA NED.
7/12/06 PET/CT Scan: (not @ VA) the original Mediastinal non reactive, no hypermetasis at original targeted lymph node, small shrinkage in size .
-- But shows SUV of 7.5 to subcarinal lymph nodes. Stage IIIB
7/20/06: Since the new cancer in the Sub-carinal lymph nodes are after first line treatment, Reclassified as Stage IV. Dr. to seek experimental trials. Poop.

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 11/2/2006 1:57 PM (GMT -8)

I don't order PET scans after CK for at least 3 months as you will rouotinely get hypermetabolic activity in the treated areas due to post-treatment inflammation. The enlargement reported on the CT may be due to the fact that there was growth between the time of the July scan and the actual treatment in September, not since. Don't despair and repeat the study in around 2 months.

Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 11/3/2006 3:16 AM (GMT -8)

I bet there is quite some story behind the angry Communist story, but I suppose it will need to wait until another time and place. I agree with Dr. Spunberg. The most important thing to take into CK treatment is patience.

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 11/3/2006 4:06 AM (GMT -8)

I wouldn't mind hearing that story...

icbn
Registered Member

Date Joined Aug 2006
Total Posts : 6

Posted 11/3/2006 3:02 PM (GMT -8)

Nothing too romantic about the story. I was just a dumb Marine Grunt in Vietnam. For some reason the North Vietnamese took a disliking to me. They shot at me a lot. The one that finally got me was an AK-47 bullet entering just to the right of and above the T-1 vertabra and exited at the left acrominclavicular area. I guess I'm hoping the glenoid liting up is due to that and not cancer.

My lung cancer I have was caused by Agent Orange (the Vets Admin has officially awarded service connection for the LC). So the irony is that the NVA wounded me, but it was my own government that ended up killing me. BTW the VA also refuses anything but offering the most minimal palliative care, 1000 ml of Gemzar ONLY and refuses to pay for the Cyberknife.

Thanks for the info. You guys perform such a great service for us. It is appreciated more than you can know.

Bill Williams

Peter
Registered Member

Date Joined Apr 2006
Total Posts : 7

Posted 11/3/2006 3:26 PM (GMT -8)

Mr. Williams,

Thank you!!

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 11/3/2006 4:14 PM (GMT -8)

I helped take care of Adm. Zumwalt's son who had a bizarre Agent Orange lymphoma. He came in contact with AO as a river boat captain after his father ordered the spraying. The interactions were breathtaking.

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 11/3/2006 8:09 PM (GMT -8)

I can't believe the VA won't pay for Cyberknife for a service related illness.

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 11/4/2006 4:28 AM (GMT -8)

Send us your images. We have had fair success in getting the VA here to pay for CK in properly selected patients. I might also be able to get the hospital to eat the costs.

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 11/4/2006 4:53 AM (GMT -8)

In that case, I have a bunch of new patients to send you.

icbn
Registered Member

Date Joined Aug 2006
Total Posts : 6

Posted 11/4/2006 8:57 AM (GMT -8)

The VA will in theory pay to treat service related injuries/illnesses, as long as they deem the treatment necessary. When my cancer spread the VA doctors said I was already dead, so CK or anything but the most minimalist palliative treatment would be a waste of tax payers money.

I wish I was lying, but this is how your veterans are treated. Remember for 20 years the government and VA said that AO was harmless and denied any claim. Finally Congress made the VA allow claims to be filed. Five years later Congress reviewed what the VA had done with AO claims. They found that the VA had approved Zero claims for AO related illnesses. Congress then toughened VA's requirements.

The same thing happened with PTSD. For almost ten years the VA denied it existed. If a vet came in complaining of flashbacks he was told they were psychotic hallucinations. The Vet was then interred in a mental ward, given the equivalent of a chemical lobotomy and when passive enough released to the streets. At one time Forty Percent of the nation's homeless population were Vietnam Veterans. Also as a result vets stayed away from the VA and never received the help they needed for PTSD in a timely fashion.

So I'm not surprised the VA has hidden behind a Catch 22 and denied treatment. Besides they took a CT scan 06/28/06. They said there was NED. They missed the dead 2 cm R4 Lymph node and the Sub Carinal Lymph Node found on the PET/CT Scan.

In short, how could I ever trust these guys? It does bother me that what may be my last few months here on earth I'm at war again. This time with the VA.

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 11/4/2006 1:34 PM (GMT -8)

That is indeed really sad and disturbing. I sure hope you can get the help that you need pronto through the VA, perhaps with Dr. Medbery's help.

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 11/4/2006 4:42 PM (GMT -8)

Also appeal locally. Call your congressman. Squeaky wheels often get greased.

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 11/4/2006 7:49 PM (GMT -8)

Wait until after the election...you may have a different congressman on Wednesday!

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