Hello, you're always a great help. I decided resection of the total mass and no biopsy. The surgery will take place on October 21. I have to hesitate because I started to partially paralyze the left side and right side now. I will ask for an MRI to see if there is a progression to the brain. 1 year, my oncologist gives me Decadron. Is it really good? I had many side effects.
Thank you very much,
Cricri
Cricri from Quebec - Dx 2001
Re: Cricri
Hi Cricri--
I hope all is well! My fiance, Anthony, has brain mets and uses decadron. He loved the drug at first b/c it decreased his brain swelling, got rid of his headaches and increased his appetite. So he took it for about three weeks and loved it. Then he tappered off. He started having issues again so he went back on it...which was the wrong decision. I would say, just make sure you only take it for as long as necessary and don't over do it.
Anthony now has issues with his stomach due to the decadron. He is incredibly gasy and burps a lot. Plus his appetite has almost diminished. So far, our doctors believe this is a result of too much steriod.
Good luck with your surgery!
Sincerely,
Kim
I hope all is well! My fiance, Anthony, has brain mets and uses decadron. He loved the drug at first b/c it decreased his brain swelling, got rid of his headaches and increased his appetite. So he took it for about three weeks and loved it. Then he tappered off. He started having issues again so he went back on it...which was the wrong decision. I would say, just make sure you only take it for as long as necessary and don't over do it.
Anthony now has issues with his stomach due to the decadron. He is incredibly gasy and burps a lot. Plus his appetite has almost diminished. So far, our doctors believe this is a result of too much steriod.
Good luck with your surgery!
Sincerely,
Kim
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cricri
- New Member
- Posts: 21
- Joined: Fri May 11, 2007 9:01 am
- Location: Bas St-Laurent, Québec, Canada
Re: Cricri
Hi Kim,
I also having trouble with this drug. I took 40 lbs, many retain water. The belly swells, face and muscles become weakened. It helps a lot for the swelling to the brain, but the side effects are terrible.
Good luck to you both!
Cricri
I also having trouble with this drug. I took 40 lbs, many retain water. The belly swells, face and muscles become weakened. It helps a lot for the swelling to the brain, but the side effects are terrible.
Good luck to you both!
Cricri
Cricri
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Cricri
Dear Cricri,
I am so very sorry about the debilitating side effects that you are suffering from the Decadron usage. We know FAR too well what you are going through from Brittany's extremely difficult Decadron experience four years ago when she was on high dose Decadron during a five month period to try to control/reduce brain swelling from her failed Gamma Knife procedure and the increased growth of her brain tumors. During that time period she devastatingly rapidly gained fifty pounds going from a petite 120 pounds to 170 pounds, she experienced greatly increased appetite and severe mood swings, agitation, and insomnia, she developed steroid induced diabetes, she incurred bone degeneration similar to osteoporosis, and she suffered heartbreaking stretch marks from the rapid weight gain. Despite repeated attempts to reduce and then discontinue the high dose of Decadron, she was not able to be weaned off of the Decadron until after the two brain tumors were resected and the brain swelling disappated. It took a gradual process of weaning her off of the Decadron, but thankfully, once she was completely off of it her steroid induced diabetes disappeared, she was able to completely lose all of her gained fifty pounds, and her appetite, sleep, and emotional situation returned to normal. Unfortunately, steroids seem to be necessary, and the only thing available right now, to help reduce brain swelling from brain tumors and the associated headaches and nausea. There is a new drug called Xerecept which apparently doesn't have all of the terrible side effects of steroids like Decadron, but it is still being tested and awaiting FDA approval, and is not available, even on a compassionate use basis which we tried to obtain for Brittany in the event that she needed steroids following her Gamma Knife this last May, which thankfully thus far she has not needed. Hopefully, you will find an effective treatment which will help to shrink/kill your brain mets so that the brain swelling will disappate and you can gradually be weaned off of the Decadron. As Kim said, try to take the minimum dosage of Decadron which is able to relieve your headache and nausea symptoms, and try to stay on them as little time as necessary. Once you do begin the weaning process, make sure that you do it gradually and not all at once or you will end up back on the high dosage again and have to start all over again. In the meantime, please take care dear Cricri and know that my best wishes and most special thoughts and prayers will be with you for a very successful outcome and speedy recovery from your breast tumor surgery next Tuesday.
Reaching out to share special hugs, caring thoughts, and continued Hope,
Bonni
I am so very sorry about the debilitating side effects that you are suffering from the Decadron usage. We know FAR too well what you are going through from Brittany's extremely difficult Decadron experience four years ago when she was on high dose Decadron during a five month period to try to control/reduce brain swelling from her failed Gamma Knife procedure and the increased growth of her brain tumors. During that time period she devastatingly rapidly gained fifty pounds going from a petite 120 pounds to 170 pounds, she experienced greatly increased appetite and severe mood swings, agitation, and insomnia, she developed steroid induced diabetes, she incurred bone degeneration similar to osteoporosis, and she suffered heartbreaking stretch marks from the rapid weight gain. Despite repeated attempts to reduce and then discontinue the high dose of Decadron, she was not able to be weaned off of the Decadron until after the two brain tumors were resected and the brain swelling disappated. It took a gradual process of weaning her off of the Decadron, but thankfully, once she was completely off of it her steroid induced diabetes disappeared, she was able to completely lose all of her gained fifty pounds, and her appetite, sleep, and emotional situation returned to normal. Unfortunately, steroids seem to be necessary, and the only thing available right now, to help reduce brain swelling from brain tumors and the associated headaches and nausea. There is a new drug called Xerecept which apparently doesn't have all of the terrible side effects of steroids like Decadron, but it is still being tested and awaiting FDA approval, and is not available, even on a compassionate use basis which we tried to obtain for Brittany in the event that she needed steroids following her Gamma Knife this last May, which thankfully thus far she has not needed. Hopefully, you will find an effective treatment which will help to shrink/kill your brain mets so that the brain swelling will disappate and you can gradually be weaned off of the Decadron. As Kim said, try to take the minimum dosage of Decadron which is able to relieve your headache and nausea symptoms, and try to stay on them as little time as necessary. Once you do begin the weaning process, make sure that you do it gradually and not all at once or you will end up back on the high dosage again and have to start all over again. In the meantime, please take care dear Cricri and know that my best wishes and most special thoughts and prayers will be with you for a very successful outcome and speedy recovery from your breast tumor surgery next Tuesday.
Reaching out to share special hugs, caring thoughts, and continued Hope,
Bonni
With special caring thoughts and continued Hope,
Bonni Hess
Bonni Hess
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cricri
- New Member
- Posts: 21
- Joined: Fri May 11, 2007 9:01 am
- Location: Bas St-Laurent, Québec, Canada
Re: Cricri
Hello, long time ago that I have not written on the forum. The last time was difficult. The surgery was done in and it was a metastatic sarcoma. Brain metastases are stable, but I must continue Decadron, there is always swelling again and I still paralysis and headaches when I try to shut down. Side effects are also horrible before. I'm really tired. With regard to bone metastases, homes are larger and more active. I take my Dilaudid for pain. The lung metastases I do not know if they have progressed my onco is not helpful for you to control because its priority is put to the brain. I can not find it easy time to live with the disease. Is there a miracle treatment for us? I still hope despite the progression of the disease. My mental and physical forces are out of breath. 7 and a half years of fighting! And I still hope. Thank you for your brand of encouragement and I say to you soon,
bye
cricri
bye
cricri
Cricri
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Cricri
Dear Cricri,
Thank you for your thoughtful update. I am so deeply sorry to hear about your heartbreaking continued pain and suffering, and the increased growth in your bone mets. I am grateful that your brain mets are stable, but am concerned that you are still on Decadron and having so many debilitating side effects. It seems that you should be able to be gradually weaned off of the Decadron if your brain mets are stable and the brain swelling has been sufficiently reduced. I know that it is a difficult process. If you have had three months of brain met stability, you might want to try to find out from your oncologist if you would be a candidate for a Cedirnaib ( also called Recentin or AZD2171) Clinical Trial since this antiangionetic treatment has shown some very promising results with two ASPS patients in shrinking their tumors and stabilizing the progression of their disease. This treatment medication can cross the blood brain barriar which is critcally important for your systemic treatment since you have a history of brain metastasis. I hope that this information is helpful to you and that if you are a candidate for this treatment that there is a Cediranib Clinical Trial open and available for you in your area. Please take care dear Cricri, stay strong, hold tight to continued Hope, and keep this Web site updated as you are able.
With special caring thoughts and continued Hope,
Bonni
Thank you for your thoughtful update. I am so deeply sorry to hear about your heartbreaking continued pain and suffering, and the increased growth in your bone mets. I am grateful that your brain mets are stable, but am concerned that you are still on Decadron and having so many debilitating side effects. It seems that you should be able to be gradually weaned off of the Decadron if your brain mets are stable and the brain swelling has been sufficiently reduced. I know that it is a difficult process. If you have had three months of brain met stability, you might want to try to find out from your oncologist if you would be a candidate for a Cedirnaib ( also called Recentin or AZD2171) Clinical Trial since this antiangionetic treatment has shown some very promising results with two ASPS patients in shrinking their tumors and stabilizing the progression of their disease. This treatment medication can cross the blood brain barriar which is critcally important for your systemic treatment since you have a history of brain metastasis. I hope that this information is helpful to you and that if you are a candidate for this treatment that there is a Cediranib Clinical Trial open and available for you in your area. Please take care dear Cricri, stay strong, hold tight to continued Hope, and keep this Web site updated as you are able.
With special caring thoughts and continued Hope,
Bonni
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cricri
- New Member
- Posts: 21
- Joined: Fri May 11, 2007 9:01 am
- Location: Bas St-Laurent, Québec, Canada
Re: Cricri
Hello member of ASPS, some time ago that I have not posted. I had a small update and ask for advice.
I Mets. bone for some time. My head of the humerus and humerus his badly damaged over 50% of the cortex is missing and there is a risk of fracture. I propose surgery to strengthen my bones and then radiotherapy. The surgery consists of curettage of the bone, put cement and then a metal plate. Do you think this is the best thing to do? I do not know it looks like my head exploded days. I do not know if I should or not. C, is palliative but as always. I do not know if I have energy again. It's been almost 8 years that I fight this cancer and I wonder with all the dishes, if I continue or not to beat me. But I know I do not want to let go. It's difficult and shocking to see that my cancer can not do anything.
Thank you for your presence,
Cricri
I Mets. bone for some time. My head of the humerus and humerus his badly damaged over 50% of the cortex is missing and there is a risk of fracture. I propose surgery to strengthen my bones and then radiotherapy. The surgery consists of curettage of the bone, put cement and then a metal plate. Do you think this is the best thing to do? I do not know it looks like my head exploded days. I do not know if I should or not. C, is palliative but as always. I do not know if I have energy again. It's been almost 8 years that I fight this cancer and I wonder with all the dishes, if I continue or not to beat me. But I know I do not want to let go. It's difficult and shocking to see that my cancer can not do anything.
Thank you for your presence,
Cricri
Cricri
Re: Cricri
Cricri, hi, I think that it is a reasonable plan as the pain from the destructing bone is going to make your life miserable, so what do you have to loose. You (and other people with the bone metastases) have also talk to the oncologist regarding biphosphonates use to stop or slow bone mets, it is a drug that slows bone turnover and at times it is a very successful treatment for bone mets. Also I wanted to point you our that we now have a new information about a case of successful treatment of the metastatic ASPS with the chemo drug gemcitabin given weekly - look for the summary in the Success stories/Personal stories topic down the main page of the board. You might want to ask your oncologist to look into this treatment as it is relatively low toxic.
Olga