Hi-grade Sarcoma

hi.  i so feel your pain and anguish and frustration! it's just so unbelievable.   my sister has high grade osteosarcoma (pelvis) that is now showing up in her lungs.  she has been on the adriamicain (sp?) both before and after her surgery (to remove large tumor in pelvis.)  her cell kill with the adr. was only %50 .  now that the cancer has progressed to her lungs, she is now being seen at MD Anderson -- which is supposedly one of the best and largest sarcoma treatment centers in the US.   she's in georgia. i'm in virginia. mom is in florida. so we're packing up and heading there at the end of the month to start "very agressive" ifosumide (sp) treatment.  she has a 15 year old daughter, 11 yr old son, a wonderfully brave husband of 20 years.  i've been with her for the last treatments of adr. and am heading out again in a week or so to texas.  you are not alone. although i am  a caregiver in this, i really do understand. she will have intensive treatemtn there for 5 - 8 months, if the ifusomide works.  i cannot believe she has to leave her kids, but you know -- all the doctors in her area and then at md anderson have told her that that is where she needs to be.  i would recommend at least looking at their website, and getting a consult. how are you doing on the ifosumide??

 my prayers are with you and your family --

michelle

v

 

On 7/17/2007 michellej wrote:

hi. i hope you are feeling well.  my sister was diagnosed last august with high grade osteosarcoma in her pelvis.  after an internal amputation, pre and post surgery chemo (adriamiacin) she now has new nodules in her lungs.  she is being seen at md anderson and they are going to put her in ifosamide.. was wondering what side effects you have had from that.

any info would be so very helpful.

 

Hello - my husband has a hi-grade peripheral nerve sheath sarcoma of the right thigh.  He has been receiving treatment for two years from MD Anderson.  He had six weeks of radiation and then 7 months of chemotherapy with adriamycin and ifosfamide at the same time.  The side effects are rough.  It will, of course, depend on what type of regimen she is put on.  He had 5 days a week, 24 hours a day of the ifosfamide and then a daily 4 hour drip of the adriamycin.  My husband experienced hair loss by the end of his first week of treatment but more importantly he experienced major sickness.  He just could not hold down anything.  He also had a lot of trouble with pain in any area with mucous membranes, i.e, mouth, rear-end, etc.  It was the longest 7 months of our life- HOWEVER - we stopped chemo 1 1/2 years ago and are now just on 10 week check-ups and so far...so good!  No recurrence at this time.  I would love to share more with you if you want more information.  please contact me if so.  Good luck and keep your head up.  Attitude is everything!

thanks so much for responding!!  My sister is flying to Houston today to begin her treatment at md anderson.  she's supposed to have 8 cycles of the ifosomide.. they're giving her an orientation on friday to tell her about the side effects, etc.  seemed like when she was on the adrimiacin she was just really tired and very icky feeling.. your husband sounds like he's doing well and i am so HAPPY for you both.  pray for us please as we emark on our new journey. I would love to keep in touch.

 

On 7/25/2007 kaydee wrote:

 

On 7/17/2007 michellej wrote:

hi. i hope you are feeling well.  my sister was diagnosed last august with high grade osteosarcoma in her pelvis.  after an internal amputation, pre and post surgery chemo (adriamiacin) she now has new nodules in her lungs.  she is being seen at md anderson and they are going to put her in ifosamide.. was wondering what side effects you have had from that.

any info would be so very helpful.

 

Hello - my husband has a hi-grade peripheral nerve sheath sarcoma of the right thigh.  He has been receiving treatment for two years from MD Anderson.  He had six weeks of radiation and then 7 months of chemotherapy with adriamycin and ifosfamide at the same time.  The side effects are rough.  It will, of course, depend on what type of regimen she is put on.  He had 5 days a week, 24 hours a day of the ifosfamide and then a daily 4 hour drip of the adriamycin.  My husband experienced hair loss by the end of his first week of treatment but more importantly he experienced major sickness.  He just could not hold down anything.  He also had a lot of trouble with pain in any area with mucous membranes, i.e, mouth, rear-end, etc.  It was the longest 7 months of our life- HOWEVER - we stopped chemo 1 1/2 years ago and are now just on 10 week check-ups and so far...so good!  No recurrence at this time.  I would love to share more with you if you want more information.  please contact me if so.  Good luck and keep your head up.  Attitude is everything!

 

hi again. i forgot to ask you if you had to relocate to houston for treatment like we are or not. just wandering about any tips as far as getting around the medical plaza, where to stay, shop, eat, etc. 

m

Hello,

I was wondering how your sister's treament went at MD Anderson. I will be going out there in the next few weeks also for high grade sarcoma. I have had five surgeries and gemzar/taxotere, adriamycin/dtic all which have not worked. I will also be starting radiation soon. Im curious to know how she tolerated her treatment. Thanks

Yvonne

 

On 1/20/2007 Cheese1108 wrote:

Hi, my mom, 55 years of age,  was diagnosed last week with hi-grade sarcoma on her right thigh. Luckily it hasnt metastisized yet, and the doctor said because of the size of the mass on her thigh the best treatment would be amputation. But my mom doesnt want her leg amputated, so we're going for radiotherapy. Is it risky to go for radiotherapy cause anytime it might metastisize? Or is it worth trying so that her leg will be saved? Any comment would be greatly appreciated.

 

Please, your best chance is to have the amputation. This sort of cancer is

tenacious. This is no time for vanity. It is her life.