Charity from Ontario - Dx 2002 - MIA

[Charity]

Hi I am always interested in hearing where people are with their treatment. Just a quick rundown I am a 38 y/o female who was diagnosed in 2002 with the primary in the right calf. I had 4 cycles dox,cicplatin and then 5 weeks radiation on my primary. Siince they didnt't work I had an above knee amputation. I then had 5 cycles of ifosfomide to address the lung mets however they continued to grow. I remained of treatment for about 1.5 years until my mets stabalized.. However I had 3 mets show up in my brain which I had treated by the LINAC in TOronto. Once my lung mets had stabalized in growth I decided to have them moved my laser resction in Germany. Where in 2006 I had 2 lung resection surgeries. I now have 2 more brain mets pop up so I am asking for Gamma Knife instead of the LINAC. Hoping for better success with this method. I would love to hear more patient profiles.

[Charity]

Well, its been a while since I have posted, so unfortunately here is my update. I had a CT of the chest abdomen and pelvis early this month and saw my oncologist last week. There has been progression in the liver,stomach lining , under my ribs and now in my right glute. my lungs are pretty stable and my chest is clear.My oncologist has absolutely nothing to offer except Gemzar and I have no interest in that.I am going to Toronto to check my brain and I hope that the mets are stable. I honestly don't have any really bad side effects. I have had one or two headaches a month which I take Tylenol 3.I occassionally have inflammmation in my lower abdomen and or my back. I have had some moments of numbness on both arms and hands and occassionally my lips. I am not on any medication right now except Lorazapam to help me sleep. All and all on paper my results are quite gloomy BUT my attitude remains strong since I feel pretty good, I have been told I look great all things considered and I will inquire with the specialists at Princess Margaret Hospital in Toronto to see what they have to offer.I have read a few updates and it seems unfortuntely this is the season of progression. We all know how terrible this disease is but this community is so strong and I am so pleased at how well this site has progressed.My best to you all. Its been 6 yrs since my diagnosis and I wish you all continued strength and I will have to stay in contact more often.

[Bonni Hess]

Dear Charity,
I am so deeply sorry that your recent scan results showed heartbreaking increased disease progression. I am very grateful that you are feeling relatively good and are not suffering any significant pain or debilitating side effects. I continue to be deeply humbled and to stand in awe of your continued incredible strength, courage, and positive attitude. You are truly a great source of inspiration to everyone fighting this insidious disease. I personally agree with your decision to not consider the Gemzar chemotherapy recommendation because although I am not a doctor, I know that four other ASPS patients who were treated with Gemzar experienced devastating rapid disease progression and tragically lost their courageous battles. I think that at the very least, it is a treatment medication which requires very close scrutiny, well researched information and data, and verifiable results of ASPS patient treatment success before the decision is made to undergo treatment with this harsh chemo regimen. There are two new promising systemic treatments that are C-met inhibitor Clinical Trials which are currently being offered at Dana Farber (one is ARQ-197 and I believe the other is XL-880) which might be a consideration for you if have proven brain met stability of three months for the ARQ-197 and I think one month for the XL-880. I would be glad to provide contact information for you if you are interested. I will be anxiously awaiting your update on the results of your recent brain scans, and holding tight to Hope for ONLY good news. In the meantime, please take care dear Charity, keep your strong positive attitude, and know that I am holding you very close in my heart and thinking of you with continued special caring.

[Olga]

Bonni - I am sorry but I will have to correct you - a few cases when people reached a terminal stage of their disease while on the chemotherapy were not with the Gemzar but with the GemTax which is a combination of the Gemzar and Taxotere. Gemzar (gemcitabine) is usually well tolerated and only rarely causes the fatal toxicity or rapid neovascularization, its advantage is its ability to cross the blood-brain barrier. I do not know if you remember, but we had an anecdotal case protocoled on the former web-site (this information was tragically lost when the old discussion board was closed by the former web-site owners) - the case was about successful long term treatment of the metastatic ASPS by the prolonged administration of the Gemzar (over the 18 month period, 3 weeks on 1 week off) with the regression of the liver and lung metastases. This girl was pregnant and her mother, who posted this story, was worried about possible negative interaction of the metastatic ASPS and pregnancy.

[Bonni Hess]

Dear Olga,
Thank you for correcting me on the information about the Gemzar. I re-checked my correspondence with the four patients who I had referred to, and you are correct about them having been on the combination Gemzar-Taxotere regimen instead of just Gemzar alone. However, the end result was tragically the same in that the Gemzar-Taxotere combination was heartbreakingly unsuccessful in preventing the disease progression and tumor growth, and the disease progressed quite rapidly while the patients were being treated with this regimen. Also I know that when Gemzar (gemcitabine) was first mentioned as a possible promising new treatment on the Discussion Board of the now inactive TAASPS Web site, we were very hopeful and had done extensive research on gemcitabine, but unfortunately we found some heartbreaking patient/family testimonials regarding the very discouraging failed results of the treatment, although we were unable to find any data regarding ASPS patient treatment experience with only the gemcitabine. Based on the failed success of the treatment and the rapid progression of the disease of the ASPS patients who we knew of that were unsuccessfully treated with the Gemzar/Taxotere combination we decided against it as a treatment for Brittany. Possibly there is now more data and information available regarding the outcome of the use of gemcitabine alone as a systemic treatment for ASPS. I would again urge anyone considering the use of this drug to gather as much researched and anecdotal information as possible before beginning the treatment, and I would hope that anyone in the ASPS Community who has experience with or knowledge about this treatment will add their comments and information to this Forum.
With special caring thoughts and continued Hope,
Bonni

[Charity]

Well friends I had my latest CT scans showed progression in all organs except stability in the lungs.My Doctor has offered Gemzar/Tax but nothing else. I find my stomach tumours, and nausea causing me occassional pain and occassional numbness from the tip of my fingers to the mid foream.I am going to have an EED and see a neurologist, since my brain is not once it was. Most of my pain occurs at night. I am taking tylenol 3.I am going to London in 2 weeks and I am trying to get a consult at Royal Marsden.I have left a couple messages however I have yet to hear anything. I wish you all continued strength to fight this terrible disease.I will be in touch...Charity

[Bonni Hess]

Dear Charity,
Thank you for your thoughtful update. I am so very sorry to hear about your continued disease progression and increasing pain. I am wondering if the pain and numbness extending from the tip of your fingers to your mid forearm is the result of your spinal tumors, which you had mentioned in a previous entry, instead of your stomach tumor. Brittany experiences similar pain and numbness in her right arm and fingers, but her neurosurgeon said that this is related to her spinal tumor. Is resection or ablation a possibility for any of your tumors to help relieve your pain? Have you tried to contact Dr. Judson at the Royal Marsden? He is Paul Mavers highly regarded and very experienced sarcoma oncologist there. Dr. Judson was kind enough to respond personally to our inquiry about the possibility of Brittany enrolling in the AZD2171 Clinical Trial that has shown promising results for Paul in providing tumor shrinkage and disease stabilization for him during the past nine months. Unfortunately, Dr. Judson said that the Phase 1 AZD2171 Clinical Trial is now closed, and the Phase 2 Trial won't be ready to begin anytime soon. Please travel safe to London and know that our best wishes, special healing thoughts, and continued Hope travel with you.
Bonni

[Charity]

Hi everyone.
I havent't seen my oncologist since July. I am due to see him December 9th so I will ;et you know what the results are.I also get the reults of my chest abdomen and pelvis.I will write an update with the results

[Olga]

Dear Charity, I hope that you your oncologist can offer you some clinical trials in Ottawa or at least a radiation treatments for the critically located metastases as it seems that your ASPS mets respond to the radiotherapy, may be the same team that has done a radiosurgery for the eye and brain mets could do it for the bone mets that you have. Do not forget to discuss the possible cediranib trial and biphosphonates against the bone mets growth.

[Charity]

Hey everyone,

Well heres my update. I got the results from my latest CTscan.There has been more progression to the spleen and possibly my femur. I have been having so much pain in both shoulders and back as well as my hip. When I met with my oncologist he said I am no eligible for the Cediranib trial because its a phase I trial and because I have had brain mets. During the first week of January I am going to have a bone scan, MRI and a meeting with the radiologist. I will also be meeting with the Doctor whose in charge of all the clinical trials.I tend to cough quite a bit these days and wheeze every now and then. Its a tough disease, I will take it one day at a time.My oncologist admitted that there is nothing to offer except the gemzar,taxotere chemo. Best wishes to everyone during this holiday season and good health in 2009.

[Olga]

Charity, thank you for the update although it is definitely not a good news. I do not really understand why the oncologist is stating a designation of this trial as a phase 1 trial like a contraindication, also people with the brain mets are excluded if they are progressive - Exclusion Criteria: * Unstable brain/meningeal metastases, may be the clinical trial doctor will be more attentive to the details. Also tell to the oncologist that Dr.Maki from MSK has recently recommended to a few our ASPS patients with the disseminated form of disease to start sunitinib off label (it is approved for other indications and is available on the market).

[Fictional]

Olga's right about your doctor not having current information. Cedirinib can stabilize brain mets and reduce their size in at least some ASPS patients and in other cancers it seems to be steroid sparing for brain metastases. Contact the trials person directly and see if you would be eligible for their trial.

Sutent can be prescribed off label by any oncologist and probably covered by insurance because of the papers showing some benefit in ASPS patients. That would mean you could just go to the pharmacy and pick it up. But there is some risk of bleeding - and from the cancer compass site, one ASPS patient with brain mets developed a small stroke while on Sutent (earlier it had looked as if it was having some shrinkage effects).

Another possibility is having your doctor prescribe Celebrex or Celecoxib. It is being investigated in many cancers for its anti-angiogenesis effects. There have been 2 cases of lung stabilization for months + on this list (ASPS, one with vinblastine too) and it seems to inhibit other high blood vessel cancers like breast CA, colon CA, prostate CA. Among breast CA patients, it inhibits the formation of bone metastases. It might only have mild anti-cancer effects, but we have thought the potential benefits out way the risks. Our daughter has had no side effects and sometimes people take it for post-op or bone pain from different causes (e.g. like arthritis). This drug is also available from your regular pharmacy. It was designed to be a strong Advil will less stomach side effects originally. If you have a sulfa allergy there is a relative contraindication.

[Charity]

Yes I have had a bottle of Celebrex for a year now but my family Doctor advised me to wait until my tachcardia settled but then I had another unknown heart problem which caused me to drop out of the clinical trial last year.I have found the bone baine in my right leg(knee and hip is the most painful. I am going for an MRI Jan 3 and a radiation consult on Jan 5. Regardless of all this news I look forward to the new year and wish you all the best.

[Charity]

Well I am updating on the latest journey with my 7 year fight with this disease. This past January I had 5 treatments of radiation on my left knee which seemed to be successful and I also had radiation on my C5 cervical spine. That one is still painfull and spreading the pain in the clavical and shoulderer blade is a bit painful.I have a few pain cocktails which help to relieve the upper pain, hoowever ther will be no surgery for me becuse of the number of places infected with metasteses.I had a heart scan last week and will get the results on Thursday when my oncologist will suggest the gemzar/taxotere again.I have no desire for chemotherepy. At my point I only want to tackling where the pain is or where the disability would constrict my mobility. I had my few episodes of coughing blood the other day, however not since then.Although I have ASPS in 6 places right now I only feel it in the C5 so I just want to focus on that/ Otherwise, I am looking pretty good. Hope your all continuing the battle. My best to you all.

[Fictional]

Hi Charity,

I just wanted to let you know that we've recently reconnected with Nancy Debolt, mom of Sarah Debolt - who had the response to Gemzar alone. Taxotere seems to be nasty stuff, but Gemzar has some effect in ASPS it seems by Sarah's experience. Check out the posts under Chemotherapy.

Glad to hear that the radiation has been helpful. Keeping you in our prayers,

'F'