Cricri from Quebec - Dx 2001

[cricri]

Hello, the results of radiotherapy are disappointing. The dish did not respond, they have increased in volume and number. Waiting for news for the gamma knife. The neurosurgeon said that combined together, it's more efficient. That is my only hope at the moment. Here I am still on the decadron and I am tanned.

Bye!

cricri

[Olga]

Dear CriCri, I am glad to hear from you. I hope that they will perform the radiosurgery soon, we have a few people brain mets completely treated with it.

[cricri]

Hello, I got news from Sherbrooke for the gamma knife. The neurosurgeon wanted to meet me and m'hospitaliser 2 to 3 days to make examinations. I am not sure he would have done the gamma knife. I decided to refuse because I made too tired physically and psychologically. I will not be able to beat me as it should. I decided to trust in life, and I remain hopeful that metastasize to the brain are progressing slowly as the lungs. For the moment I want to pick up speed and be able to enjoy life a little.

I wish you a nice day,

Cricri

[Bonni Hess]

Dear Cricri,
Thank you for your thoughtful update. If I understand what you wrote correctly, you decided to refuse to be hospitalized for the neurosurgeon to perform some examinations and make a decision regarding Gamma Knife treatment for your brain mets. I completely understand your wanting to take a break from doctors and treatments to just enjoy Life for awhile, but I am very concerned about your not getting some kind of treatment for the brain mets as soon as possible since our experience has shown that unfortunately the brain mets usually grow much more rapidly than the lung mets. If Gamma Knife is a possiblity, it needs to be done when the tumors are as small as possible for the best chance of a successful response. Please take care Cricri, know that I am holding you very close in my heart and my most caring thoughts, and keep in touch as you are able.
With special caring and continued Hope,
Bonni Hess

[Beth]

Dear Cricri,
I agree with Bonni -- please see a radiation oncologist as soon as possible -- my son has had many mets to the brain -- I can't even tell you how many because I can no longer remember details such as these -- he's had whole brain radiation and since then he's had one surgery to remove a brain tumor and several times targeted radiation -- with cyberknife-- frankly I don't know the difference between cyberknife and gamma knife but they are both targeted radiation to the mets and I hope you will find the energy to pursue this treatment -- sincerely, Beth

[cricri]

Dear member of asps,
long ago that I did not write on the forum. During my irm February 26, irm showed a slight decrease in méts. brain and no news. The irm of June showed a stability and no new méts. I have not accepted the gamma knife or other treatment. I know that asps are resistant to treatment, then I expect the miracle cure.

Thank you for this forum that allows us to feel less alone!

Cricri

[Olga]

Hi, I am very glad to hear that there was a shrinkage in the brain mets after the radiotherapy and then a stability - may be on the first scan that was done soon after the radiotherapy the supposed increase was a post irradiation inflammation when they get bigger.Anyways, thank you for keeping us up to date and sharing the information and just being with us along this road.

[cricri]

Hi Olga, after a good news. Doctors have discovered bones metastases. I'm discouraged and I am afraid. At the basin, they can treat me with radiation to relieve me and stabilize growth. I have the impression that cancer takes over and I am afraid. I do not know anything to bone metastases and my doctors do not speak much. If someone can help me this would be appreciated.

Bye

cricri

[Olga]

Hi again, sorry to hear your bad news. Where are the metastases and what size? One of our patients had her met successfully ablated by the RFA, the other patient had it irradiated and on the next scanning this met was not seen on the scans - probably a resolution after the treatment. Also ask your doctor about biphosphonates - they are oral drugs that slow down formation of the bone metastases.

[Bonni Hess]

Dear Cricri,
Thank you for your continued updates. I was so very happy and encouraged to hear about your brain met stability, and am very Hopeful that the radiotherapy treatment has been successful in preventing any new brain mets and increased growth in the size of your existing ones. I am so sorry to hear about your heartbreaking new diagnosis of bone mets. However, Brittany had a met in her tibia which was successfully treated by Radiofrequency Ablation almost three years ago, and thankfully there has been no reoccurence. Depending on the size and location of your bone mets, Hopefully RFA is a treatment option. Please let me know if I can provide any further information to you about the RFA treatment. In the meantime, please take care and keep us updated as you are able.
With special caring thoughts and continued Hope,
Bonni

[cricri]

Hi Olga and Good Hope,
I get help because I feel powerless and I do not want to die. My radio oncologist wants to manage a single metastasis by radiotherapy. Is the same thing Radiofrequency Ablation? The bone metastases are at the right posterior pelvic bone (25mm x 42mm). Hip right femoral head (19mm x 16mm). At the level of the thorax, several small homes. Another home to proximal humerus law. Discreet reaction bone at the femur place of origin of the huge external tumor left. He speaks of a screw inserted in the femoral head to avoid a fracture. I do not know what to do and I am discouraged. I think I'm starting to be invaded by the disease. I just look for information on the forum, but I do not understand everything because as you know I spoke in french and I can get just a little English.

Thank you for your support and your help

cricri

[Olga]

No, it isn't. For the Radiofrequency Ablation (RFA) the probe is inserted into the tumor and heated to cook the tumor, but probably it is not good for the location of your mets, so your doctor is right and radiation is better here. Do nor forget to ask about bisphosphonates - drugs that are taken systemically to prevent the progression of the bone metastases.

[Bonni Hess]

Dear Cricri,
I am so deeply sorry about your multiple bone mets. Because of the location of the mets, I don't know if Radiofrequency Ablation is a possible treatment option, but I think that you should definitely discuss it with your doctor since it does seem to be effective if it can be safely done in the area of treatment. Please let me know if I can provide any information for you on Brittany's experience with RFA to her tibia. Please know that our continued special thoughts and strengthening support are with you.
With special caring and continued Hope,
Bonni

[cricri]

Hello, I just finished radiation treatment for pain. To date no change. After the bones, now just a solid mass appearing in a breast. Waiting for a biopsy hoping that this is benign. But is this a sarcoma can form this place? I'm anxious, I try not to make me negative scenarios, but it is rather difficult.

Good night to all and thank you for being there!

Cricri

[Bonni Hess]

Dear Cricri,
I Hope that you tolerated the radiation treatment well and that it will be very successful in destroying your bone mets and alleviating your bone pain. I am so very sorry to hear about your new concern with the finding of a solid mass in your breast. I share your Hope that it is only a benign growth, but unfortunately there is a possibility that the mass could be an ASPS met as Brittany had an ASPS metastatic tumor develop in her breast in June 2007, and another ASPS patient on this Forum has had two ASPS breast mets. Because the tumor may be ASPS, I would strongly recommend against having a biopsy since the biopsy itself could further spread the tumor cells. In Brittany's case, we refused the biopsy due to our concern about it seeding the tumor cells, and we opted for resection of the small tumor. As we had suspected, the mass was an ASPS met which was verified by the post op tissue pathology test. Fortunately, the breast tumor was encapsulated, as is typical of ASPS mets, it was easily and successfully completely resected in a short out patient surgery, and Brittany made a rapid and full recovery from the surgery. Thankfully, thus far, Brittany has not had any reoccurence of the resected breast tumor nor any new breast mets. Based on our experience, I would encourage you to forego the biopsy and proceed with surgical removal of the breast mass as soon as possible. Please let me know if I can answer any questions which you may have regarding our experience with this situation. Take care dear Cricri and keep the Web site updated as you are able.
With special caring thoughts and continued Hope,
Bonni Hess, mother of Brittany Hess