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Joined: 9/28/2009
Posts: 8
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I am worried because I have notice severe side effects that are twitching, vision loss, hearing, balance loss, bleeding from the ears and nose, throwing up. It was been about 6 weeks since last treatment. The Doctor says this is normal due to the CK affecting the tumor, he said that if it was not working then I would not have these side effects, by the CT scans it has shrunk but only by a few microns, it is inoperable in the frontal lobe. Is this normal and based upon average time spans, I know everyone is different what and how long does this last? One minute I am fine and the next I can not stand the pain and side effects? Can anyone offer any advice?
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Joined: 10/10/2008
Posts: 2327
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Bleeding from the ears is DEFINITELY not normal. Steroids might be helpful in some cases, but you would need to ask the doctors who treated you.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/11/2008
Posts: 922
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Sounds like increased intracranial pressure from swelling (edem) for which steroids may be indicated. This matter should be looked into right away and treated appropriately.
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
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Joined: 9/28/2009
Posts: 8
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The Doctor has me on Steroids and in a conversation with him yesterday 9-30-09 he stated that it is working because of these side-effects are being caused by the encrypted part being affected. He also stated that it would get worse before it would get better. He also stated the swelling is also causing a lot of the pain and other side effects. Does this sound correct since the encrypted part is being attacked by the treatments? Thank you so much for responding to these questions.
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Joined: 9/28/2009
Posts: 8
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I had 3 treatments with in a 5 day period, Mon, Wed and Fri.
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Joined: 9/28/2009
Posts: 8
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I have stage 2 Glioblastoma.
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Joined: 10/10/2008
Posts: 2327
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I don't know what you mean by "encrypted part".
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 9/28/2009
Posts: 8
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The way that I understand the encrypted part of the tumor is the part that is causing the health issues and is inoperable. Thanks
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Joined: 10/10/2008
Posts: 2327
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I still don't understand the term. I suspect that there is some communication gap with the doctors and I think you should address that. I am not sure they are making themselves clear, or else it is not coming across to me. Where is the CK center?
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 9/28/2009
Posts: 8
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The Encrypted part os what my doctor is referring to the part that is in the Brain and then the rest is on the outside of Brain. Thank you for your help.
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Joined: 10/10/2008
Posts: 2327
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Glioblastoma is contained within the brain, and comes from brain tissue. Perhaps he was referring to the microscopic disease outside the area that is visible on scans. In any case, you have had the treatment and are on what sounds like appropriate treatment for what is probably swelling from the treatment and the tumor, and hopefully things will go well.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 9/28/2009
Posts: 8
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I am still having side effects, loss of sight and swelling, the doctor said this is normal but I am getting worried. I am on steriods, how long after treatment can this last and do you guys agree that this is normal? Thanks, D
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Joined: 10/10/2008
Posts: 2327
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It would be very difficult to comment on specifics since we have not seen the scan, but the time frame is not particularly unusual. Loss of sight is not normal. What do you mean by that?
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 9/28/2009
Posts: 8
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The Doctor said the swelling of the Brain and the effects it had on the tumor could cause body functions to be affected due to the location of the tumor in the frontal lobe.
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Joined: 10/11/2008
Posts: 922
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That is true, but usually managed easily with Dexamethasone (corticosteroids). Also, it usually resolves over time, and the steroid dose is gradually tapered down and then discontinued.
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
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Joined: 10/10/2008
Posts: 2327
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Body functioins are not usually seriously affected by swelling in the frontal lobes unless there is a great deal of swelling. That part of the brain does not control many body functions.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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