Hi all ! I have been fighting SS for 7 years. Has anyone tried high dose doxorubicine / ifostamide combination for Synovial Sarcoma ? I will start tomorrow..Share your experiences with me.
after the frist chemo, all hair will loss. if you are in a good condition( physical and mental ), vomit can be avoid. but after many times chemo, the good condition its hard to maintain.
For me, doxorubicin and ifosfamide was given in different cycles: 2 cycles of high dose ifosfamide then one cycle of doxorubicin+cisplatin. I reported doses and side effects here:
https://sites.google.com/site/synovialsarcoma/chemotherapychimiotherapie
Blood tests here:
My son, Ian was given ifos and dox for his primary treatment. I understand it to be the standard protocol for pediatric synovial sarcoma (although that may have changed).
I had a 6 dose plan of ifos+doxo, I got through 4. Did not go beyond that because of minimal change between dose 3&4. It did result is a majority of my SS showing signs of necrosis. My tumor was behind my knee. Then it was off to radiation and surgery. I lost all my hair, the tough raw part was the lack of an immune system. Had to go back to the hospital 2 times with 0 white blood cell counts and a fever. Blood transfusions and neulasta helped. 4 years this march was my surgery, have been dealing with metastasis in my lungs since. Good luck!
If you wish to join the Sarcoma support group at groupspaces.com( let me know so I can send you further info!
there are several people on there who had it,
my experience was so rare that I don;t want to mention it to you. Thankfully Dox alone was able to shrink my apple to a manegable size for Radiotherapy to kill it, left with a 4cm lump but apart from some Horners syndrome vastly diminished I have no real problems( a secondary 6mm lung met was removed by surgery last September.
wishingyou well and hopefully if you have been fighting for 7 years you have a lot left in you yet>
you did not say where the original was.
mine was under my right collarbone attached to right lung and wrapped round brachial nerves and blood supply hence no operation on that was possible.
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My son is starting his 4th round this week. First was roughest, not knowing what to expect. Learned to take all medication for nausea before symptoms appear, as it is hard to play catch up. Also learned to avoid germy places, as he got neutropenic and fever so hospitalized. He is always fine in the hospital. A little nausea on the last 2 days. Vomits on the ride home, next day neupragen shot. The first week home tired, nauseated and diarrhea. But then he was fine. He is still nauseated every am, but it goes away. The first week home he needs to sleep a lot, and drink drink drink. Dehydration sent us back to hospital first round. He tells me he doesnt see the big fear of chemo, that it really is nothing.(he is young ) hair fell out after second round and grew back thicker, for the first time in his life he is able to grow facial hair. He takes claritin the last day of chemo for 4 days to help with the bone pain from the nupragen shot, and it really helped. First round the bone pain was terrible in back and hips. And his nausea seems to be motion related like bouncy cars, or blinky lights. He takes ativan, and a few other nausea meds around the clock the first week, to prevent. Then usually ads immodium ad. Best of luck to you. He says the worst part is sitting in the hospital for 6 days because he feels perfectly fine until day 4, gets a little tired and winded easy.
ALL your hair will be lost and I do mean all! ;-) which for a woman is OK in parts but so weird losing eyebrows and nasal hair,
not so bad losing in the Brazilian area and other areas where waxing is often used!
Thanks for reminder, PLease do ask for anti nausea meds, IF they don't work TELL the staff as they can try a combination and or different ones.
Possibly there may be some nerve damage which hopefully resolves once chemo is finished.
BUT whatever happens if you are feeling bad, or something does not feel right TELL STAFF. phone your named nurse, or whoever you have as contact ASAP as if there is a problem, as we know like our cancer if caught early is much easier to put right!
Huggles
ScattierShirley
I did six cycles of it. Well 5 with doxorubicin / ifos and 1 just ifosfamide.
My tumor went from 8cm to 2cm on it.
Hopefully you live somewhere that supports medical marijuana. A little tincture or a pot cookie was the only thing that helped my nausea.
And yes, I lost all of my hair. All of my hair. Losing the eyebrows and eyelashes was the worst.
There are reasonably fair chances of SS respoding to Ifosfamide/Doxo combination. Ideally doctor would like to go for six cycles, depending upon response. I had six cycles of chemo with same combination, after first cycle itself all hairs were lost. Nausea remained in control. Response to medicine was good. After sixth cycle I was hospitalised for neutopenia. This chemo regimen is tough but you can definitely overcome it. Best wishes.
hi,
my son , who is 13yrs , has just finished 3 cycles of that combination of chemo.........high dosage too , for stage 4 synovial sarcoma.......now had tumour removed in jan , and doing great .....having his hickman line removed tomorrow......was sick and vommitting for the first 2 but not really much for the third......good luck with your treatment
I had 4 rounds of it. It kept the SS down for about a year before it began coming back. I did well on the combination. I maintained an adjusted work schedule and stayed active. I did lose my hair, but my eyebrows stayed in as long as I didn't pull on them. They kept me on anti-nausea medicine during infusion and I felt nauseous only once. During the infusion I did end up sleeping quite a bit, which I think was a mistake on my part. After infusion, I returned to the adjusted work schedule and received neulasta for low white blood counts. I got very low on red blood cells (hematocrit), but was able to bounce back until the last round which required me to get a transfusion. I had some mouth soreness, and at one point had some constipation. Overall, I am lead to believe I tolerated it well.
my husband has been on both at different times neither worked for him. he was ok on the ifostamide but the doxorubine made him very sick for a few days after he received it, best of luck and i hope all goes well for you x
Love the responses because they all are so true. I did 3 rounds easy! Did it in three months and then had intra operative surgery (2nd surgery, 1st surgery they didnt know it was SS) at UCSF. After recovery did 6 weeks of radiation. Worst part was after all this my seroama in my leg blew up which produced over 600 ccs in my 3rd operation. Recover has been rough but nerve pain has been diminishing (2400mg of neurotin daily)and finally able to walk alillte without a cane. Docs want to do more chemo but I’ve got to return to normal life and work after 8 months. Thinking about chemo for the summer, any thoughts?
Wew were at ucsf also. Dr Odonnell is my sons surgeon and Dr.Jahan is his oncologist.
Brian, it's difficult to predict whether doing chemo now or in the summer will make a difference. Too many uncertainties... Just follow your gut feeling to be comfortable with whatever decision you make.
Godze, just curious if you could share what treatments you have been doing for the past 7 years of your battle with SS? For most of us in the states I think I can safely say that this combination is one of the first lines of treatment...
Thank you and stay strong!!!
Wow. Your story is identical to that of my daughters. Are you doing votrient now? How old are you?
Daniel J. Thibault said:
I had a 6 dose plan of ifos+doxo, I got through 4. Did not go beyond that because of minimal change between dose 3&4. It did result is a majority of my SS showing signs of necrosis. My tumor was behind my knee. Then it was off to radiation and surgery. I lost all my hair, the tough raw part was the lack of an immune system. Had to go back to the hospital 2 times with 0 white blood cell counts and a fever. Blood transfusions and neulasta helped. 4 years this march was my surgery, have been dealing with metastasis in my lungs since. Good luck!
My daughter had a 4 cm tumor behind her knee. She had six rounds of doxy/ifos, with 24 rounds of radiation, she started to burn on thr 23 treatment, so I decided to stop early. She had 95% necrosis of her tumor. I wish that I knew if it was the radiation or chemo. The tumor was excised with clean margins in 2011. 3 lung nodules were found Dec 12. 2 were excised, one remains. She is now taking votrient. Stay positive, and keep busy. Surround yourself with people that love and support you, and know that you have this thing beat already.