Medical Forum / Diseases and Disorders / Cancer / May 2005
hello
|
|
Thread rating:  |
blokedownpub - 21 May 2005 15:11 GMT Hi, I just thought I drop a wee email to say hello.
I sent an message to another group regarding the use of cannabis as a treatment for brain tumours and was given advice and invited here by J. Thanks J :)
My wife was diagnosed with a brain tumour about 4 years ago and had it resected and given radiotherapy. She is now out of remission and thus i'm investigating other treatments that'll hopefully stop the growth. In addition to cannabis, I'm looking into thalidomide that may be a far better option.
In all this time my wife has been an absolute star. She is being really strong. Stronger than I. Throughout the last four years she's carried on working as a nurse on a breast care ward where she helps people through their cancers every day and in addition she spends her spare time in our local cancer research charity shop.
Anyways, less of my rattling on.
Thinking of you all.
Gav.
Alayne - 21 May 2005 18:29 GMT > Hi, I just thought I drop a wee email to say hello. > [quoted text clipped - 19 lines] > > Gav. Hello Gav,
Welcome to the ng. although sorry that you had the need to come here.
I'm also sorry to hear about your wife too. I do have some experience of coping with a partner with a brain tumour., my husband Tony was diagnosed with a GBM back in Oct 02 and it's not a pleasant journey. I can't help you with your specific question on thalidomide as we stuck with chemo and radiotherapy, but I can lend a shoulder or an ear if it helps.
Warm Hugs and rattle on all you wish ;-)
Alayne
blokedownpub - 23 May 2005 10:41 GMT Hi Alayne, nice to meet you and thanks for you warm words :)
Sorry to hear about your husband too. It sounds like you're a bit further down this unpleasent journey than my wife, or did your husband get offered chemo as well as radiotherapy at the beginning?
My wife's not been given chemo yet as the tumour has just started to regrow. I'm looking in to treatments that will slow down the growth so that it will delay the time she will need chemo.
I suppose I'm doing what everyone does at this point and that is scrabbling around for scraps of info to find a solution to delay the enevitable.
Thanks again for your support and I hope I do the same for you :) Gav.
Bob Allison - 23 May 2005 22:40 GMT > My wife's not been given chemo yet as the tumor has just started to > regrow. I'm looking in to treatments that will slow down the growth so > that it will delay the time she will need chemo. I had whole brain radiation for mets of Small Cell Lung Cancer (SCLC). I had a second occurrence of metastases in my brain and regular radiation was not an option. I was treated with a machine called the CyberKnife. It is similar to the Gamma Knife, but more patient friendly. The use is described at <http://www.accuray.com/ck/plan12.htm>
Google will get you more info. Mine was done at Stanford in CA, but there are many other locations around the world.
Worked for me. Now i'm spreading the word when the situation arises.
 Signature You're only young once; you can be immature forever
Bob In Carmel, CA
J - 24 May 2005 09:16 GMT > > My wife's not been given chemo yet as the tumor has just started to > > regrow. I'm looking in to treatments that will slow down the growth so [quoted text clipped - 11 lines] > > Worked for me. Now i'm spreading the word when the situation arises. Hello Bob, I'm not sure that would work (extend survival by an appreciable amount of time) for Glioblastoma. Picture a bushy tree, but a bunch of invisible roots stretching out into other areas of the brain. Could you please copy page 56 of this http://www.ahfmr.ab.ca/hta/hta-publications/infopapers/stereotactic_radiosurgery _update.pdf
here for us? And the date. (my computer's not happy with long PDF files). Thanks J
Bob Allison - 24 May 2005 21:46 GMT > Could you please copy page 56 of this > http://www.ahfmr.ab.ca/hta/hta-publications/infopapers/stereotactic_radiosurge [quoted text clipped - 5 lines] > Thanks > J Got a screen shot. Where to send it?
 Signature You're only young once; you can be immature forever
Bob In Carmel, CA
J - 25 May 2005 10:15 GMT > > Could you please copy page 56 of this > > http://www.ahfmr.ab.ca/hta/hta-publications/infopapers/stereotactic_radiosurge [quoted text clipped - 4 lines] > > Got a screen shot. Where to send it? Thanks Bob. I think Gav got it for me. J
J - 24 May 2005 11:20 GMT > > My wife's not been given chemo yet as the tumor has just started to > > regrow. I'm looking in to treatments that will slow down the growth so [quoted text clipped - 3 lines] > had a second occurrence of metastases in my brain and regular radiation > was not an option. I was treated with a machine called the CyberKnife. Hello Bob, Could you please explain to us the risks? Similar to surgery?
Was that the one that caused you long-standing severe fatique? People have to know the risks and the downsides too. I hope you'll share, so gavin can get a good picture of each option for his wife. Thank you, J
blokedownpub - 24 May 2005 14:08 GMT Here's the info:
David Hailey May 2002
Brain tumours SRS treatment of primary brain tumours, other than acoustic neuromas, was not specifically considered in the 1998 AHFMR report. In the present report, separate classification has been made for studies on treatment of meningionas and pituitary tumours. Studies on other types of brain tumour, primarily malignant lesions, are summarised in Table 8. It is of interest that in the eight studies that used linear accelerator technology, four used fractionated doses. One of these compared LINAC with FSRT and concluded that they were equally effective but that use of FSRT was associated with a lower rate of complications. In the remaining papers, any comparisons with surgical and other radiotherapy approaches were based on literature reports from other centres or historical controls. There were six studies that used the GK, one of these in association with a brachytherapy technique. Five studies reported treatment of gliomas, indicating relatively limited success. Abdelaziz 182 comments that unsatisfactory results of SRS for GBM and fair results for astrocytomas reflect use of a highly focal treatment for the management of diffuse, infiltrative disease. However, Alexander and Loeffler 183 suggest that SRS can result in significantly improved survival and should be considered for patients with small, radiographically distinct and focally recurrent GBM. The need for appropriate use with surgery and other adjuvant therapy is also noted. Two of the studies considered treatment of children and indicated useful results for some types of brain tumour. Nieder et al. 184 have published a review of treatment results for recurrent malignant gliomas. They conclude that post - operative chemotherapy and radiotherapy appear equally effective, but with differing toxicity profiles; survival results of various radiotherapy methods are largely comparable, with a trend to improved results with combined radiotherapy and chemotherapy; and that considerable toxicity is associated with radiosurgery or brachytherapy. Irish et al. 185, from analysis of cases in a clinical/ imaging data base, have suggested that there is evidence for selection bias in uncontrolled trials of SRS. Those patients with malignant glioma deemed eligible for adjuvant SRS had more favourable prognostic factors and significantly longer median survival than ineligible patients. SRS - eligible, conventionally - treated patients with GBM and a group of SRS -treated patients had similar median survival times (16.4 v 19.7mo). Irish et al. suggest that a phase III study of SRS for malignant glioma would be unlikely to yield a positive result and may not be necessary.
J - 25 May 2005 10:13 GMT > Here's the info: Thank you, Gav
David Hailey May 2002
Brain tumours Stereotactic radiosurgery treatment of primary brain tumours, other than acoustic neuromas, was not specifically considered in the 1998 AHFMR report.
In the present report, separate classification has been made for studies on treatment of meningionas and pituitary tumours.
Studies on other types of brain tumour, primarily malignant lesions, are summarised in Table 8.
It is of interest that in the eight studies that used linear accelerator technology, four used fractionated doses.
One of these compared LINAC (stereotactic linear accelerator) with FSRT (Fractionated stereotactic radiotherapy) and concluded that they were equally effective but that use of FSRT (Fractionated stereotactic radiotherapy) was associated with a lower rate of complications.
In the remaining papers, any comparisons with surgical and other radiotherapy approaches were based on literature reports from other centres or historical controls.
There were six studies that used the Gamma Knife, one of these in association with a brachytherapy technique.
Five studies reported treatment of gliomas, indicating relatively limited success. Abdelaziz 182 comments that unsatisfactory results of SRS (Stereotactic Radiosurgery) for GBM and fair results for astrocytomas reflect use of a highly focal treatment for the management of diffuse, infiltrative disease.
However, Alexander and Loeffler 183 suggest that Stereotactic Radiosurgery can result in significantly improved survival and should be considered for patients with small, radiographically distinct and focally recurrent GBM. The need for appropriate use with surgery and other adjuvant therapy is also noted.
Two of the studies considered treatment of children and indicated useful results for some types of brain tumour.
Nieder et al. 184 have published a review of treatment results for recurrent malignant gliomas. They conclude that post-operative chemotherapy and radiotherapy appear equally effective, but with differing toxicity profiles; survival results of various radiotherapy methods are largely comparable, with a trend to improved results with combined radiotherapy and chemotherapy; and that considerable toxicity is associated with radiosurgery or brachytherapy.
Irish et al. 185, from analysis of cases in a clinical/ imaging data base, have suggested that there is evidence for selection bias in uncontrolled trials of Stereotactic Radiosurgery.
Those patients with malignant glioma deemed eligible for adjuvant Stereotactic Radiosurgery had more favourable prognostic factors and significantly longer median survival than ineligible patients.
Stereotactic Radiosurgery (SRS)-eligible, conventionally-treated patients with GBM and a group of SRS-treated patients had similar median survival times (16.4 v 19.7mo).
Irish et al. suggest that a phase III study of Stereotactic Radiosurgery for malignant glioma would be unlikely to yield a positive result and may not be necessary.
J - 25 May 2005 12:09 GMT > Here's the info: Hello Gav, I've reposted it. Gad, I had to search out the acronyms and convert them. I re-paragraphed that section of the longer article to see if I could make sense of it. I'm still not totally certain what one paragraph says about "radiosurgery" and toxicity.
I picked that website for several reasons: Alberta (I think) is more technically advanced (read: spends more on advanced technical equipment) and based on reading another newsgroup, has excellent neurosurgeons. I also picked it in the hope that it would be objective (ie not trying to "sell" a procedure.
There's another (objective, I think) one here. It shows pictures of the machine and someone being prepared for treatment. http://www.vh.org/adult/patient/radiationoncology/guide/04understanding.html
Risks of Linac Treatment
The radiosurgery physicians will explain the radiosurgery risks that apply to your particular situation when they meet with you during your initial consultation.
There is minimal if any immediate risk of radiosurgical therapy. In the case of AVMs, the goal is to create "thrombosis" or a depletion of blood supply to the AVM. It typically takes up to three years for an AVM's blood supply to completely shut down. During that time, a small number of AVM patients, about 3 percent per year, experience rebleeding. The risk of bleeding after radiosurgery is about the same as living with an untreated AVM and this is fortunately very small. Therefore, waiting for the treatment to produce a cure is a common practice.
There is a very small incidence of delayed side effects from treatment related to the radiation. Radiation exposure sometimes causes brain tissue around the AVM to die, leading to a variety of neurological complications, depending on the location of the lesion. This occurs in less than 3 percent of AVM patients.
The goal in patients with an acoustic neuroma (AN) or meningioma is shrinking of the tumor or stopping the growth of the tumor. About half the patients with an acoustic neuroma (AN) or meningioma show a shrinkage of the tumor after radiosurgery, while about 40 percent of tumors remain the same. Less than 10 percent of these tumors continue to grow. Facial nerve and/or trigeminal nerve problems develop in about 3 percent of AN patients.
Malignant tumors may also occasionally have late side effects. The chance of such an event depends on the size of the lesion, the specific type of tumor, as well as any previously received dose of radiation and tumor location. The specific risk for you should be discussed with you by your physician.
here, they're talking about metastasis... One major consideration of the radiosurgery team when deciding whether your lesion is treatable with radiosurgery is its size. Patients whose lesions are less than 4 cm in diameter are potential candidates for LINAC treatment. The decision as to whether the best treatment is radiosurgery, surgery, or stereotactic radiotherapy requires careful consideration of all aspects of your case by medical experts in neurosurgery, radiation oncology, and other specialties. In addition, the patient should make an informed decision based on the information provided by these experts.[end copied text]
What I have been trying to accomplish is to find out if: 1) such treatment has risks/complications - I guess you would have to ask a specialist or ask for their standard consent form, to see what warnings they put on it (or say about the particular treatmnts). 2) how it compares to regular radiatherapy (gain, risks, costs) 3) how it compares to chemos, such as you are investigating (gain, risks, costs) 4) whether your wife would be a good candidate. (see "4 cm in diameter "above)
I'm not sure that I've accomplished any of it. I'm not sure if it's available in the country where you are living. I'm not sure if there's a certainty of only the few months extra, which seems to be implied in that first article, or things could be different in your wife's tumour situation. I would sincerely like to think that longer might be possible for your wife with this treatment now vs waiting until the tumour grows and treating it with chemo, but I'm not an expert on any of this.
You would have to discuss this option with specialists in your area.
I've done the best I can. If I find anything else that might be helpful or relevant to this treatment, I'll let you know. J
blokedownpub - 26 May 2005 17:21 GMT Thanks J, you really know what you're talking about. Are you in the medical profession?
I'll pass this information onto my wifes consultant. Thanks ever so much again.
Gav.
J - 27 May 2005 10:23 GMT > Thanks J, you really know what you're talking about. Are you in the > medical profession? > > I'll pass this information onto my wifes consultant. Thanks ever so > much again. Hello Gav, No, I'm not in the medical profession. Steph and Peter Moran are doctors. I try to present good information so that patients or loved ones, can consider options carefully.
I'm not sure what a "consultant" is. It's a very general term, when I use it. I would want to speak to someone who is expert at reading brain scans, knows about how each type of brain tumour behaves and is technically skilled and experienced at radiology and who knows of others (similar to your mother's situation), who may have tried SRS. This might be difficult to do, since SRS equipment may not be as available in some countries and given that your wife is in a relatively good position (small tumour - GBM) and have the benefit/time of considering choices. Maybe I'm overthinking, but perhaps a neurologist's opinion, might be helpful also.
Since you realize now that I'm not an expert, I can only leave you to considering the advice that you will receive from experts and going with what you and your wife think is best for your wife. I don't want you to "break the bank" if SRS is not covered in your country, if there'd be no improvement over doing nothing or trying one or other chemo. Or if regular "judicious" radiation therapy, would do as good as SRS.
I have high hopes that your wife's situation will be different and she will become a longer survivor. My best to you in your decisions. J
J - 29 May 2005 11:55 GMT > Here's the info: > [quoted text clipped - 10 lines] > would be unlikely to yield a positive result and may > not be necessary. More on GBM http://brain.mgh.harvard.edu/PatientGuide.htm (excerpt) Types of therapy
There are three standard types of treatment for patients with high-grade gliomas: surgery, radiation therapy, and chemotherapy.
Because grade 3 and 4 tumors have a tendency to grow rapidly, treatment must be started as soon after surgery as is feasible, allowing time for the surgical incision to heal. Generally, this means that patients should be undergoing either radiation therapy or chemotherapy within 2 to 4 weeks after surgery. An algorithm that is commonly used for treatment of high-grade gliomas is presented on the following page.
While therapies for high-grade gliomas are helpful, at present these treatments cannot cure these tumors.
The two major reasons for this are that tumor cells infiltrate into surrounding brain and thus cannot be completely removed by the surgeon, and that most glioma cells are at least partially resistant to radiation and chemotherapy.
The goals of treatment are to:
-remove as many tumor cells as possible (with surgery) -kill as many as possible of the cells left behind (with radiation and chemotherapy)
-put remaining tumor cells into a nondividing, sleeping state for as long as possible (with radiation and chemotherapy)
High-grade glioma cells almost always start to grow again at some point in time.
Bob Allison - 24 May 2005 22:13 GMT > Hello Bob, Could you please explain to us the risks? > Similar to surgery? [quoted text clipped - 5 lines] > Thank you, > J The chest and whole brain radiation caused the fatigue. The Cyberknife was a one time treatment with no noticeable side effects. Stereo-tactic Radio-surgery will zap tumors that can't be reached by normal surgical means. It is particularly good for tumors that are close to, or wrapped around a nerve, blood vessel, spinal cord, etc. or when he amount of radiation receivable has been maxed out
I understand it is being used on tumors in locations other than the brain. Just guessing, but it seems fit for liver cancer, especially where there are multiple sites involved. My observations are purely from a patient's point of view, so anything I say can and will be used against me in a court of law :=)
The cost is probably about the same as for surgery. My treatment cost Blue Cross about $12,000 US
BTW Sunday May 29 will be my 2 year anniversary.
 Signature You're only young once; you can be immature forever
Bob In Carmel, CA
J - 25 May 2005 11:47 GMT > The chest and whole brain radiation caused the fatigue. The Cyberknife was > a one time treatment with no noticeable side effects. Stereo-tactic [quoted text clipped - 11 lines] > The cost is probably about the same as for surgery. My treatment cost Blue > Cross about $12,000 US Thank you, Bob. It's expensive (I understand - they have to pay for the equipment and training etc)
> BTW Sunday May 29 will be my 2 year anniversary. And glad we are that you are here with us. :-) Happy Anniversary, Bob ! J
J - 22 May 2005 11:29 GMT > Hi, I just thought I drop a wee email to say hello. > [quoted text clipped - 15 lines] > > Anyways, less of my rattling on. Hello Gav,
I'm glad you found us. We're here to listen and care. Your wife's done really well. You're right; she's a star patient and sounds like a wonderful person and nurse.
I put your wife's type of cancer in the subject line, in case others want to drop in and post to you. (some don't read all the posts, they just check the subject lines)
Last night, I found a list of GBM survivors. As best I can remember, they had surgery, radiation therapy and later temodar (temodal). One or more had a resurgery. Is that not an option for your wife? How's your wife feeling now? (ie does she currently have troublesome symptoms?) Did she initially have surgery and/or radiation therapy?
Thalidomide's been around for a long time. I see cliniical trials for brain tumours and thalidomide dating back at least to 1999. I would think if it had proven to be useful, they would have suggested it quickly for Alayne's Tony. Is there a Phawe III or Phase IV clinicial trial for same? Please/thanks.
Keep in touch and rattle on all you want. J
J - 22 May 2005 11:42 GMT > Hi, I just thought I drop a wee email to say hello. > [quoted text clipped - 13 lines] > through their cancers every day and in addition she spends her spare > time in our local cancer research charity shop. Hello Gav, I found some Phase I and II trials for brain tumours and thalidomide (with or without other treatmetns). Here's an example (it's phase II -measuing for efficacy and toxicity).
http://clinicaltrials.gov/ct/show/NCT00079092?order=1
RATIONALE: Thalidomide may stop the growth of malignant glioma by stopping blood flow to the tumor. Drugs used in chemotherapy, such as procarbazine, work in different ways to stop tumor cells from dividing so they stop growing or die. Combining thalidomide with procarbazine may kill more tumor cells.
PURPOSE: This phase II trial is studying how well giving thalidomide together with procarbazine works in treating patients with recurrent or progressive malignant glioma. <end quoted text>
Your wife sounds like a good candidate. Maybe I'm being dumb today, but I wonder how thalidomide stops the blood flow to the tumor without stopping the blood flow to the brain? Any ideas?
J
blokedownpub - 23 May 2005 10:56 GMT Hi J, thanks for your kind words and investigating thalidomide for me. I'll have a good read of the info this evening and see if the trial would be well suited to my wife.
My wife is feeling fine at that moment. She has been having mri scans every six months and it has caught the tumour early. The scan has been sent to the surgeon to see if it's worth operating on now but the consultant thinks that the best thing is to leave it until the tumour has grown. This is why i want to do something now to try and stop it from growing. He doesn't want to give her chemo now as the tumour will get resistant to it so it's better to wait until it is necessary.
Regarding how thalidomide works, I think (and don't quote me on this) that it doesn't stop the blood flow. When tumours reach a certain size, they have to create their own blood supply and the thalidomide stops this taking place. It's the same thing as happened to thalidomide children.
Thanks again :) Gav.
J - 24 May 2005 10:57 GMT > Hi J, thanks for your kind words and investigating thalidomide for me. > I'll have a good read of the info this evening and see if the trial [quoted text clipped - 12 lines] > they have to create their own blood supply and the thalidomide stops > this taking place. Thanks for explaining, Gavin.
Well that trial combined thalidomide with procarbazine which is a chemo (not thalidomide alone). They're listed separately here http://www.cancerbacup.org.uk/Treatments/Biologicaltherapies/Angiogenesisinhibit ors/Thalidomide
http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualdrugs/Procarbazine
I hope you understand that I'm not recommending anything; we're just exploring options?
I wonder how thalidomide gets to the tumour before it has a created it's own blood supply? It's used for blood cancer - myeloma.
For some reason VEGF came to mind. vascular endothelial growth factor. http://www.ons.org/publications/journals/pdfs/spotlight45.pdf The normal vessel is different from the tumor vessel. This is why we believe we can target tumor vessels without targeting normal vessels, Venook said.
Tumor blood vessels, for unknown reasons, are different and may be more vulnerable or more dependent on VEGF. (later they mention glioblastoma). Belief is not always fact. I would have to bow to a comment by Steph and hopefully not "it has its uses".
Sounds to me that Bob's idea might be a better one, but I don't know - have to wait until someone copies that section here (of the pdf file) so we can all read it.
a) the risks and b) if it's available where you are J
tracysmithpdx@hotmail.com - 29 May 2005 16:36 GMT Hi: Check out stopmycancer.com about a woman with a brain tumor who is trying a new treatment with great results. Just might be helpful.
J - 29 May 2005 17:21 GMT > Hi: Check out stopmycancer.com about a woman with a brain tumor who is > trying a new treatment with great results. Just might be helpful. Search results for: 65.102.52.165
OrgName: U S WEST Internet Services OrgID: USW Address: 950 17th Street Address: Suite 1900 City: Denver StateProv: CO PostalCode: 80202 Country: US
NetRange: 65.100.0.0 - 65.103.255.255 CIDR: 65.100.0.0/14 NetName: USW-INTERACT99-2BLK NetHandle: NET-65-100-0-0-1 Parent: NET-65-0-0-0-0 NetType: Direct Allocation NameServer: NS1.USWEST.NET NameServer: NS2.DNVR.USWEST.NET NameServer: NS3.MN.USWEST.NET Comment: ADDRESSES WITHIN THIS BLOCK ARE NON-PORTABLE RegDate: 2001-01-03 Updated: 2002-08-12
TechHandle: ZU24-ARIN TechName: U S WEST ISOps TechPhone: +1-612-664-4689 TechEmail: abuse@uswest.net
OrgAbuseHandle: QIA2-ARIN OrgAbuseName: Qwest Abuse OrgAbusePhone: +1-877-886-6515 OrgAbuseEmail: abuse@qwest.net
OrgNOCHandle: QIN-ARIN OrgNOCName: Qwest IP NOC OrgNOCPhone: +1-877-886-6515 OrgNOCEmail: support@qwestip.net
OrgTechHandle: QIA-ARIN OrgTechName: Qwest IP Admin OrgTechPhone: +1-877-886-6515 OrgTechEmail: ipadmin@qwest.com
# ARIN WHOIS database, last updated 2005-05-28 19:10 # Enter ? for additional hints on searching ARIN's WHOIS database.
|
|
|