One patient with glioblastoma still alive nine years later
by willnkimberly on Fri Oct 24, 2008 12:00 AM
by lisaann on Sun Oct 26, 2008 12:00 AM
I'd insist on a PET scan right away to see if these spots light up or not. If they do, they'd be highly suspect as cancerous. If they don't, they still could be suspect but just watching them and rescanning in another 6-8 weeks is what I'd think might be a good idea. Don't just do nothing right now! I know from experience how much can grow in a three month period.
by homan on Sun Oct 26, 2008 12:00 AM
My doc just told me they found small spots on both lungs. I am not sure if your doctors meantioned it but if your cancer has spread (metastasize) to other organs then you are in stage IV. My doc has arranged for me to see a specialist on freezing (really a form of radaition) the cancer to kill it but there are serveral factors to why they can not do it. Some of the reasons for not doing it are the size and number of tumors, the location of the tumors in reference to blood vessels as the freezing can cause cause the blood vessels too easily rupture, and the age and general health of the person. I am sure there are a number of other reasons why it can not be frozen.
Do not get frightened about the above as many websites and doctors will give the stats on 5 year survival rate for stage IV cancer but know this that does not mean it applies to you as everyone who has cancer has there own clock and respond to cancer differently. I think the you should a Google search for the primary type of cancer you had spread to the lungs and you will get a good idea what treatments are available and why your doctor is taking a wait and see attitude. Good luck.
by tarachand on Sun Oct 26, 2008 12:00 AM
I just saw your post about spots in the lungs. Since you were already on FOLFOX, it might be related to side effects of chemo like Oxaloplatin which might cause lung fibrosis. God willing these minute nodules might be related to that effect. Some times non specific inflamatory changes may manifest in similar fashion. Usually the Radiologist assume the worst once they find out clinical history of colon cancer, without colon cancer history the report might have been non specific benign nodules with recommendation for follow-up contrst enhanced CAT SCAN of chest 3 months later if nodules measure 5 to 8mm, usually nodules less than 5 mm end up having a follow-up about 6 to 12 months later. PET scan idea is a good idea, but it can not clear you entirely. Your doctor is right to wait and see after 3 months, since your CEA level is within normal range. Tarachand
My first thought is did you have problems with your chemo treatments? From what I have read is that lung scaring/problems are due to toxicity of a chemo drug (not really a side effect) or an alergic reaction to it. If you did not have a problem with the chemo treatments then within a short time after your treatments stop the drugs leave your system. It looks like your treatments ended some time ago. In saying this the lungs can also get non cancerous spots for other reasons.
I was told the same thing by my doctor at first but since my blood test showed cancer and the scans showed the spots I questioned why wait the 3 months. The problem with this waiting 3 months is no one knows how aggressive is it? I asked him what other options were there and about freezing the spots. That led to them arranging the appointment to see the specialist. I still have to wait sometime to see him but atleast I am not waiting the 3 months then having them set up the appointment to see the specialist. I might get another opinion or atleast another blood test as if it is positive for cancer then you have more options. Better save then sorry.
by Jeffy on Fri Nov 07, 2008 12:00 AM
When i was diagnosed Nov 05 with colon cancer they also saw multiple small spots in both lungs. After surgery to remove the colon tumor and multiple rounds of chemo the spots did not change in size. After 2 months the spots were slightly larger but too small for needle biopsy. The docs suggested that I wait until they were bigger. I told the surgeon and oncologist that I wanted to know what they were so I insisted on a laproscopic lung biopsy. Sure enough they were cancerous tumors. I did 6 months of folfox and out of the 50+ tumors, half of them shrank and the other half disappeared. Since folfox is so toxic even though it was working, they had to take me off of it and try something else. Did folfuri, Avastin and just finish Vectibix. The tumors are growing again and 2 of the tumors are getting quite large. I am having a hard time breathing with alot of congestion and coughing. I am now on my 3 round of folfox again and we will rescan after the 4th round. I think it is helping my breathing so I think its working again. I am a 39 yr old male and have lost alot of weight and am in bed for about a week after treatment. It is definitely harder on me this time I think because of the breathing issues with it. I wish I would of done the folfox again earlier before I started developing breathing issues. I had to go to the emergency room 5 days after first treatment because I was coughing up blood. The docs think that one of the tumors near the lung wall disistergrated and caused a hole in the lining and caused a 30% collapse in my left lung. It healed up on its own though. The blood may have bee because of a damaged blood vessel because of tumor shrinkage. For your info the Avastin only stopped growth for about 6 months but no shrinkage. The Vectibix was a waste of time. I still have skin issures because of it and am reading now that it only works on 4 out of 10 people. You have to have a mutated gene called KRASS to have it work but there are few ocologists that test for this mutation before prescribing it.
My suggestion is to try to find out as soon as possible by PET or biopsy to find out what it is so you know how to proceed. If it is cancer then hit it hard before it gets a chance to grow and spread. If not then it will at least give you some peace of mind.
Good luck and God Bless,
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