Another tumor

Oh my gosh!!  My mother had been diagnosed with high grade soft tissue sarcoma 5 months ago.  At that time she had a tumor approximately the size of an orange on her hip.  She was put on Ifex and Doxil combo for 2 cycles of 7 day 24 hour infusion in the hospital.  Because of the drastic side effects she was unable to continue with the treatmet, the good news was that the 2 cycles of chemo did shrink the tumor, but she still had mets in the lymph nodes and a new area show up on the PET scan in her back.  She then began Gemzar and Taxotere which much less hard on her.  Today we went to the oncologist and found out that she has a 15 cm mass on her hip/back area which is another sarcoma tumor.  The oncologist feels the current chemo is not cutting it and gave us the impression that this is about all that can be done.  How does this cancer grow so fast and vicious??  This tumor was not present a month ago, and practically erupted over night.  We are loosing hope fast, I'm not ready to loose my mom, we always thought she would be able to fight it. It is so unfair and I am so angry!!!!

I'm so sorry to hear about your Mom.  Sarcomas are so rare, there is just not enough information about them.  My husband had his first soft tissue sarcoma in 05 in his left deltoid. They did something similar where he was in the hospital for 72 hours straight with dioxirubin and cisplatin.  Then off for 3 weeks (yucky side effects) and then back in for another go round.  Their hope at the time was to shrink or kill the tumor.  It killed 20% of it and then they operated.  Looked good then, only to come back in 08 this spring on the right side of his body in his shoulder.  Took that out and now in oct 08 sarcoma metaticised in his lungs and pelvic column.  You are right this is so unfair and not right.  But you must fight and your Mom and the rest of the family must fight too.  Stay positive, look for good things and never, never, never give up.  Cancer loves negativity so try to find the good in what is going on.  This board can be very helpful with information and positive thoughts. Keep posting, keep asking questions, people will answer and will help.  And keep the positive thougths coming, even when you are angry and wish there was an answer why.  I will put you, your mom and your entire family in my good thougths.  Stay postive and good luck.

 

On 11/4/2008 emb1960 wrote:

Oh my gosh!!  My mother had been diagnosed with high grade soft tissue sarcoma 5 months ago.  At that time she had a tumor approximately the size of an orange on her hip.  She was put on Ifex and Doxil combo for 2 cycles of 7 day 24 hour infusion in the hospital.  Because of the drastic side effects she was unable to continue with the treatmet, the good news was that the 2 cycles of chemo did shrink the tumor, but she still had mets in the lymph nodes and a new area show up on the PET scan in her back.  She then began Gemzar and Taxotere which much less hard on her.  Today we went to the oncologist and found out that she has a 15 cm mass on her hip/back area which is another sarcoma tumor.  The oncologist feels the current chemo is not cutting it and gave us the impression that this is about all that can be done.  How does this cancer grow so fast and vicious??  This tumor was not present a month ago, and practically erupted over night.  We are loosing hope fast, I'm not ready to loose my mom, we always thought she would be able to fight it. It is so unfair and I am so angry!!!!

I am so sorry to hear about your mother. I am the caregiver for my husband. He is 59 years old and has been living with this for 2 years. You are so right when you say this is a vicious cancer. I know you are angry. I have gone thru so many emotions in this two years. He has had several rounds of Gemzar & Taxotere but it hasn't helped. One mass even grew. It is on his lungs and I am concerned about it going to the brain.

 

I truly do feel your pain and anger! I just lost my Daddy 1 week and 2 days ago after he fought this cruel disease for 3 years! His first tumor was in his right thigh and was about the size of a banana (it was wrapped around the thigh). The doctor wanted him to do 28 days of radiation before operating, which he did! By the time they took the tumor out, a month later, it was 13 lbs.! Until he got sick, I had never even heard of sarcoma! Now I know why they call it "the forgotten cancer"! I couldn't find anything useful on the web at first. Only grim statistics and "in memory of" videos! But I feel that had we been informed, from the beginning, about how this disease works, we would have gone to one of the few sarcoma research centers for treatment! The dr. who operated on his leg made it seem as if he would take the tumor out and that would be that! Daddy would be better! NOT the case! By the time he went for his 8 week check up...mets to the lungs! He did all of the chemos, sutant, herbs, nothing worked! The disease was ravaging his body! Then I found Dr.Mita at the Sarcoma Research Center of Texas. She is in San Antonio and is doing tials with a drug called Reolysin. It has had AMAZING results in mets to lungs from sarcoma! Unfortunately, four days before we were to go to Texas, Daddy woke up and couldn't use his right side! You guessed it-mets to the brain! He fought SO hard, undergoing open brain surgery, gamma knife surgery, and more radiation! But his body just wasn't strong enough! He passed away less than 5 months later (2/2/09). Now I feel it is my calling to help anyone who feels as lost as we did about this disease! So my advice is... RUN! DON'T WALK to a treatment center that specializes ONLY in sarcoma! It is such a rare cancer, especially in adults, and most oncologists who don't treat it everyday just aren't qualified to treat it at all! I don't mean to be so blunt, but if it saves a life, I will do whatever it takes! I don't want another family to go through what we went through and are still going through! Don't give up hope! Don't stop fighting! And DON'T take just one doctors opinion! This cancer doesn't fight fair and I HATE SARCOMA!!! So block out the bad things you read and google "new hope for sarcoma patients"! May God bless you and your family! Message me anytime!

Julie

Hi Julie,

  Thank you so much for your help, and I am so very sorry about your father. On Xmas Eve my brother-in-law was diagnosed with a pleomorphic sarcoma the size of a grapefruit above his heart (and laying on it) at the aortic arch. It is the rarest of the rare...rare type of sarcoma and in a location that they have almost never seen it before. He has mets in his lung and liver already. Originally his prognosis was so grim..1-2mos...it has already been 3 and he has such a positive attitude...Its amazing. We are all fighting like crazy to help. He originally had 1.5 liters of fluid drained from his pericardial sac (unreal!)..but since then, has been back in the gym, working out, going to work most days...and aside from losing his hair (chemo)..he looks so good! No weight loss,was always athletic..still looks it, even rosey cheeks!  He was first seen at Ohio State's cancer center (not a sarcoma center)...so we flew him to Dana Farber (Harvard)..who deals with sarcomas. He has also been to U of MIch to check on a clinical trial there...and I have written,phoned and emailed docs all over. I thought I'd post what I've found here...and if anyone has more places to go...I'm on it! 

  So, first Steve did 2 rounds of AIM chemo (Aramycin and Infocamide)...didn't help. Now he is about to complete the 2nd round of docetaxel and gemcitabine and will then have a scan to test his progress. The docetaxel is REALLY hard on his joints..sure hope its helping. Surgery is out because of the location of the primary tumor, unless chemo can shrink it significantly...(3 opinions including MD Anderson and Dana Farber)...ditto with radiation. Checked on proton therapy in Ca, In, and Fl..all NO's. Tried to check on ablation for the met tumors...but all said NO until the chemo shows signs of halting growth, stablizing systemic spread.  We feel like waiting for the primary tumor to shrink is dangerous, because in the meantime the mets could be zapped, but no one seems to agree with that thought. Just so hard to sit and wait, although I do understand that invasive treatment could speed up the spread if a chemo isn't controlling the spread systemically.

Anyway, any help is soooooo appreciated. I am checking into the REOLYSIN now. Hopefully if the current drugs fail again, that might be an option for him. He is located in Ohio...but can travel, if necessary.

 Thank you again for your support, information and positive outlook!

MIchelle

 

On 3/22/2009 stahswim wrote:

Hi Julie,

  Thank you so much for your help, and I am so very sorry about your father. On Xmas Eve my brother-in-law was diagnosed with a pleomorphic sarcoma the size of a grapefruit above his heart (and laying on it) at the aortic arch. It is the rarest of the rare...rare type of sarcoma and in a location that they have almost never seen it before. He has mets in his lung and liver already. Originally his prognosis was so grim..1-2mos...it has already been 3 and he has such a positive attitude...Its amazing. We are all fighting like crazy to help. He originally had 1.5 liters of fluid drained from his pericardial sac (unreal!)..but since then, has been back in the gym, working out, going to work most days...and aside from losing his hair (chemo)..he looks so good! No weight loss,was always athletic..still looks it, even rosey cheeks!  He was first seen at Ohio State's cancer center (not a sarcoma center)...so we flew him to Dana Farber (Harvard)..who deals with sarcomas. He has also been to U of MIch to check on a clinical trial there...and I have written,phoned and emailed docs all over. I thought I'd post what I've found here...and if anyone has more places to go...I'm on it! 

  So, first Steve did 2 rounds of AIM chemo (Aramycin and Infocamide)...didn't help. Now he is about to complete the 2nd round of docetaxel and gemcitabine and will then have a scan to test his progress. The docetaxel is REALLY hard on his joints..sure hope its helping. Surgery is out because of the location of the primary tumor, unless chemo can shrink it significantly...(3 opinions including MD Anderson and Dana Farber)...ditto with radiation. Checked on proton therapy in Ca, In, and Fl..all NO's. Tried to check on ablation for the met tumors...but all said NO until the chemo shows signs of halting growth, stablizing systemic spread.  We feel like waiting for the primary tumor to shrink is dangerous, because in the meantime the mets could be zapped, but no one seems to agree with that thought. Just so hard to sit and wait, although I do understand that invasive treatment could speed up the spread if a chemo isn't controlling the spread systemically.

Anyway, any help is soooooo appreciated. I am checking into the REOLYSIN now. Hopefully if the current drugs fail again, that might be an option for him. He is located in Ohio...but can travel, if necessary.

 Thank you again for your support, information and positive outlook!

MIchelle

 

Michelle,

I'm SO sorry to hear about your brothers fight with sarcoma! I must say, however, his spirit sounds very much like that of my Daddy! I remember him smiling even when we would get the worst of news and he would always say "It will be alright"! I think it takes a special person to fight sarcoma! I also know how hard it can be to be the one who loves him and is trying so tirelessly to save him! Believe me we got shot down time after time! But the important thing is that you are not (and especially that he is not) giving up! The answer is out there! I'm happy to hear you've checked on the reolysin, also! Even if he is not a candidate for that particular trial, having Dr.Mita look at his files and examine him would be worth the trip! She is a woman who, from what I understand, has dedicated her life to treating and finding a cure for sarcoma! And she is good at it! It's awesome that you all got started seeking out all of your options early in the diagnosis. We trusted Daddy's doctor for WAY to long! There are hundreds of people out there trying to find answers and happy to take a look at new cases. I would recommend getting all of his files, scans, chemos, etc. put on a disk for you personally to use. That way when you find a doctor that sounds promising, you can email them his records before you fly halfway across the country to see them. Almost all oncologists who specialize in a particular cancer are willing to at least take a look at someones file. And, by law, any doctor he has seen has to release his records to him. I know it seems like I'm rambling and telling you the most trivial things right now! But in the end, they are the valuable things that could take days to get and could make the difference between life and death! I am hoping others can learn from what we weren't told from the beginning! You, your brother, and your entire family are in my heart and prayers! I DO understand! And one more thing, as a last resort, look up "Coley's toxins"! I was amazed when I read about it and it DOES make sense! Also, there are many, many clinics which will perform it today! You write me ANYTIME you need advice, have a question, or just need a shoulder to cry on! I'm here and I feel your hurt!

Blessings,

Julie

Wow! You answered so quickly..thank you!  I have a feeling we are kindred spirits...birds of a feather. I have to DO something..I feel like you are the same. I had already done as you suggested 2 wks ago, with regard to the cd's of scans, records, etc. I felt bad asking him to "get another copy for me"...because then I would naturally have to report another "NO" when he asked. So, I asked if it was okay if I just made some copies to send out on my own, and he agreed. I'll let you know when I hear from Dr. Mita. And yes, the "good ones" respond quickly and with compassion. The quacks (and they are out there) try to profit from your misfortune. Hard to imagine, isn't it?  Anyway, I will check back often and thank you again for your sweet support.

Michelle

Michelle,

Definately keep in touch and let me know how he's doing and how YOU'RE doing! It's funny how something so bad can bring together such good people! If I hear any reports of new treatments, I'll let you know! This is my hearts calling! To give others what we didn't have, so you are my blessing! Look forward to hearing good news from you! Keep your spirits up because we have to fight the battle while they fight the war! You have a friend in Alabama who gets that!

Sincerely,

Julie

Hi Again,

  Little update and more news to pass on to help someone else, I hope. This past week I got some disappointing news, but from some very wonderful doctors. First I had read some med reports about doctors at Sloan-Kettering doing surgery on the great vessels/sarcomas. I got an instant reply back from Dr. Parks there..sweet, sweet man. Meanwhile, I saw a show featuring a Dr. at Cedars-Sinai named Peter Julien that was having great success with ablating tumors..even sarcoma mets. He, too, was a very sweet man. He said he would ablate mets if I could find a surgeon to operate on the aorta/vessels..and could use him to "make a deal".  (The mets had disqualified Steve from surgery option before.) Dr. Parks agreed, to do surgery in spite of mets...if they could get to tumor. Unfortunately, after conferring with other surgeons, it was deemed inoperable at this point. Bummer...so close. However, if the chemo can just show enough shrinkage, he'll reconsider. (Cross your fingers...tests in 2wks). Both doctors were so kind and caring, and so prompt with replies. Steve wanted to finish this Gem/Tax cycle and see if it works before considering other chemos. I'm going to go ahead now and check on the other one you mentioned...just in case.

  I have searched from Germany to Cali, NY to Tx..and about a dozen other places inbetween. Running out of options, but still hoping for a miracle..

  Thanks again,

Michelle

Hi Michelle,

have a look at this website http://www.neuroendoscopy.info/. They mostly specialize in brain but maybe Dr. Thio can help.

regards

Colin W 

 Ps the land of OZ can do some good things at times.