Monday, November 21, 2011

In Cape Town... Again!

Well after 3 years I am back in Cape Town, and for a lot more of a fun reason than brain surgery.  It is strange to be at the other side where I am engaging with doctors as a person and not a patient. Cape Town is beautiful as ever and we have been given complementary accommodation at the Commodore Hotel in the Waterfront. It is a 5 min walk to the BOE centre where the congress is taking place. I am so happy and grateful to have this accommodation that is so close to the area that we can just take a walk to the congress and back. So because they have been so nice to us and given us this spoil, I ask any of you to consider them when you are next in Cape Town.

When we got to the BOE building, everyone had set up their elaborate stalls. (Although due to space limitation, not as elaborate as the SASMO congress.) We had to wait to find a spot for us to set up, as the original space was too narrow. It literally took us 15 minutes to set up. We decided not to use a back for the stand as there is such a beautiful view around the marina and of the mountain. What stand could possibly top that? Once again I was struck by the futility and absolute waste of money in setting up these stands. Sure have something that looks good, but I have to question the level of how much is spent on a stand vs how much is spent on a group of patients. The BONUS is that our stand ended up right opposite to the tea and coffee area and next to Netcare who are looping a video of brain tumour facts! So, in a weird kind of way, they are selling the foundation for us!

James and I attended the opening function last night, which was a simple wine tasting and snacks. Like the last congress, I found it impossible to actually network as everyone had their little cliques. James and I did find a table with two neurosurgeons who then proceeded to opening hit on me! Too much wine and FAR too much ego, the classic "I will teach you to be a neurosurgeon" comments. To think that I could have had that as a doctor is quite scary. I have, however, met some really genuine doctors who have a passion for patients and are not driven by money. (But believe me there are many that are in it for money alone) I will be visiting the Red Cross (where many childhood brain tumour patients are) as well as Groote Schuur (one of the largest and best state hospitals in SA) on Thursday.

I am so grateful to have James with me to help with bags, set up and fending off doctors who obviously think I am available and 'want' them. Seriously? Although he does have to go back tomorrow and I will have to sit the last two days out.  He needs to get back to sort out his business and kids. The years is quickly drawing to a close and we are needing to make sure we are covered financially.

Speaking about money, perhaps one of the things that is really bothering me is that when going to these things, I see so much money being spent on the wrong things. So far, other than a bit of funding to cover the SASMO congress, James and myself have been funding the foundation personally. I just can't go on like that forever. I want to discuss this with some doctors to see if they would be willing to donate towards the foundation so that I can do it more on a full time basis. However, if I cannot get funding, I just literally can't afford to go on. Something that has been burdening me for sometime now... besides the injustice of the situation, I also feel that I could contribute in some way. Ultimately we only have one life and when the reality kicks in that we have to be living it fully, it is often too late. As much as we need money in our society, wealth does not create happiness or meaning. The unfairness is just so evident and I hope that our children will be less selfish and more connected with the realities to make this a better place. Once again, something I intend on covering in my masters.

Thursday, November 17, 2011

Brain Tumour Foundation of South Africa: WSSFN Congress Cape Town

Brain Tumour Foundation of South Africa: WSSFN Congress Cape Town: The WSSFN Congress takes place in Cape Town from 20 - 24 November 2011. This congress is for the World Society for Stereotatic and Function... Click for more information

Sunday, November 13, 2011

A second opinion - irapid consult

Thanks to looking at Sarah's blog (listed in bloggers links) I noticed a blog she suggested which was Viewbeyondthetable.com which was a blog where specialists had recently written articles about brain tumour types. On further research I found that this blog was linked to a website in Calgary, Canada. There are a team of medical professionals who focus only on CN brain tumours and offer second opinions. Obviously no-one is saying that your doctor hasn't made the correct diagnosis, but it is my opinion that too often in South Africa we believe that our treatment and our cancer lies in the hands of one doctor only. This autonomous approach is not helping you, the doctor or your family. (Something I am bound to write on later) Anyway, they took 48 hrs to review my case after I emailed all my MRI picture and completed the form online. This certainly was a rapid response.  I highly recommend their service for your own peace of mind and to get an international understanding of what treatment options there may be for patients. Their website is www.irapidconsult.com There is a cost involved, but at present I am considering trying to set up some trials and second opinions through the Brain Tumour Foundation of South Africa. Below is my summery all the way from Calgary! (Please note they have given a lot more information that I just don't have space to publish)


Welcome Deirdre ! |
Patient: Deirdre Kohler
Submitted on: 11/10/2011 2:18:37 PM
Uploaded file: MRIReportDKohler.zip
Reviewed on: 11/12/2011 10:27:19 PM

Summary
In summary, you began having psychomotor seizures at age 21, which almost certainly relate to your left temporal lobe tumor. It is also possible that the event during childhood were seizures and would also likely be related to your tumor.  In 2008, your surgeons removed a tumor classified as oligodendroglioma grade II-III. From the information you provided, not sure of 1p19q status. In addition to surgery, you also received fractionated radiotherapy and temozolamide. Both of these have been shown to prolong disease free interval and survival in patients with oligodendroglioma.
Follow-up MR images show a resection cavity and MR signal changes (water) in the adjacent white matter which do not show local mass effect or change over time. This favors radiation induced changes rather than residual tumor. Furthermore, I understand you are clinically stable.
What are my options?
Option 1: Radiological observation with MR imaging.
My My chance of getting better
This strategy will not result in clinical improvement. In addition, you should conduct an exercise program as people with tumors who exercise do better than those who do not. Although not proven, it would likely be beneficial to take anti-oxidants such as vitamin C and E.
My chance of staying the same
Relatively high, particularly if the white matter changes are indeed related to radiation rather than residual tumor.
My chance of getting worse
Depends on the nature of the white matter changes. If the changes are secondary to radiation, they will not likely progress. If residual tumor, however, at sometime they would progress necessitating re-do surgery and / or chemotherapy.
Option 2: Surgical intervention at this time.
My My chance of getting better
None, particularly clinically stable and your images have not changed over time.
My chance of staying the same My chance of staying the same
High, however surgery could as well damage fiber tracts or brain connections resulting in increased deficit.
My chance of getting worse My chance of getting worse
Low, however the white matter abnormality involves an area of your brain controlling speech. Therefore, biopsy of the tissue cannot be performed without some risk.
What should I do?
Serial MR brain imaging. As stated above, it would also be beneficial to have your pathology reviewed and the molecular nature of your tumor established relative to 1p19q deletions.
References

  1. Bauman GS, Ino Y, Ueki K, et al. Allelic loss of chromosome 1p and radiotherapy plus chemotherapy in patients with oligodendrogliomas. Int J Radiat Oncol Biol Phys 2000;48:825-30.
  2. Cairncross JG, Ueki K, Zlatescu MC, Lisle DK, et al. Specific genetic predictors of chemotherapeutic response and survival in patients with anaplastic oligodendroglioma. J Natl Cancer Inst 1998;90:1473–9
  3. Cairncross JG, Macdonald DR Successful chemotherapy for recurrent malignant oligodendroglioma. Ann Neurol 1988;23: 360-4.
  4. Yan H, Parsons DW, Jin G, et al. IDH1 and IDH2 Mutations in Gliomas. N Engl J Med 2009; 360:765-773
  5. Cairncross JG, Berkey B, Shaw E, et al. Phase III trial of chemotherapy plus radiotherapy compared with radiotherapy alone for pure and mixed anaplastic oligodendroglioma: Intergroup Radiation Therapy Oncology Group Trial 9402
  6. Shaw EG, Scheithauer BW, O'Fallon JR, et al. Oligodendrogliomas: the Mayo Clinic experience. J Neuro- surg 1992;76:428-34.

Thursday, November 3, 2011

MRI Results November 2011

Well the machine was it's normal noisy self - no surprises there. As per usual I triple plugged my ears and that was manageable. I have now had my 12th MRI (I worked it out the other day)

I still need to see the oncologist and neurologoist but the report from the radiologist is as follows (the conclusion only)
  1. There are post-surgical changes in the left posterior parietal lobe with post-radiation changes in the white matter.
  2. No recurrence of the glioma
  3. Compared to the previous study no interval change.
So all in all it seems positive. I am, however, concerned about the radiation type damage that seems to be evident on the scan as an items that were not there before so I am definitely seeking a second opinion. I can believe that there is radiation damage as I have this vein that is "popping" out of my head at the temple. It seems to be weak and reminds me a bit or the animation series "Stressed Eric" - looks like its gonna pop any day!

One of the concerns I have with the report is that they refer to the tumour as being in the parietal lobe and not the temporal lobe as per my original diagnosis. Anyway - just hearing of NO GLIOMA is always good news. So I tick this off for another 6 months! I do plan on taking it with me to CT for the congress I am attending. 

Please check on www.braintumour.co.za because we have a few things happening which seem to be very exciting! I would love everyone's support. The Brain Tumour Foundation has been invited to exhibit at the african neurosurgery congress (thats not the real name, its some long name so this is my version) here is the website http://www.wssfn2011.org/ So James and I are off from 17th - 24th November. It is really exciting to be able to get involved.

Funny story: My mom, when she went back to university to study, used to drive to fetch my brother with frozen peas on her head as she said the thinking made her head hot! - thinking is a dangerous sport!

Here pics from the MRI results:


 




Tuesday, November 1, 2011

MRI booked!

Finally I have braved the storm and going for my MRI on Thursday at 8:45... Time again for a horribly noisy machine, injections and hours of anticipation waiting for results. Believe it or not after having done this now over 10 times, I have trained myself to go into a semi-sleep state plus most of the time I spend in there is in a meditative prayer. For those who have been through it I am sure you know what I mean.

I can't pretend that the MRI results doesn't scare the hell out of me BUT at least I know I am going to get it over with. I can then also take it to CT with me for Dr Butler to have a look at...

Results to follow shortly...

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