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Round 1 of chemo


#1

My husband’s first round chemotherapy is AIM. The doctor had us do a chest x-ray after this first round and it shows that the nodules in his lungs have grown slightly… does this mean that this chemotherapy isn’t working or just to early to tell? He also has it in his bones but I know that takes a long time for any results.

I can’t tell you how happy I was to find this group! Thanks


#2

A chest X-Ray doesn't give a lot of details and may not be the best tool to make a good assessment of the situation. I am not sure how position and angle may affect the image... A CT scan would be more appropriate. The other thing to consider is whether the increase could be due to inflammation. The interpretation is delicate. What does the oncologist think?


#3

Haven’t talked to him yet. You can see your results on our account on the website. Just wanted some other opinions until we see him on Monday.


#4

Hello, so sorry to hear about your husband. I am going to be brutally honest with you. Chemo therapy does not work on Synovial Sarcoma. I would recommend you try a gene therapy trial that does not also require chemo being added. The other recourse at this point is alternative therapy such as Gerson, Thermal therapy in Europe and Mexico. Or Alternate therapy in Mexico. Gilberto Alvarez, MD, Stella Maris Clinic. There is also a good German Dr. named Rolle that removes the lung nodules. May God Bless you and give you guidance and wisdom.

Synovial Mom


#5

Hi, sorry can't agree with the reply stating chemo doesn't work on synovial sarcoma. Both types of chemo I had, one which was the US equivalent of Aim and then Trabectedin both worked, short term but did still work. Am starting Votrient on Monday, so shall be keeping positive for that. Also totally agree CT scan much better than xray, more detailed from what I hear.

Sending you lots of love and try whatever is thrown at you to remain optimistic, not always easy but you can do it.

Karen xxx


#6

Hello,

I had the same experience after my first two rounds. We then switched to high dose ifex. Had a 30% decrease at first (May), but the tumors have not changed much with the july and august rounds. We are debating whether we should try one more time or change chemo drugs. My oncologist also does xrays monthly and Ct Scan every 3 months. His rational is to limit my exposure to radiation.
By the way, I also tried hyperthermia in Europe but did not see a significant change.
Dr Rolle in Germany said he could do laser surgery on my small nodules and maybe try a lobectomy on my biggest mass. Still need to make a decision there as well.
Someone suggested I tried NYESO. I will look into it next week.
Finally, I am taking a concoction of aloe vera+raw honey + whiskey as well as graviola leaves tea.
Stay positive and try anything you and your husband can, with your oncologist OK of course.

Best,
Danie


#7

My understanding is that SS needs to be cut out. Chemo may help shrink and manage the tumors, which is good, but cutting it out is best if possible. I'm currently doing the AIM treatment and after three rounds, my tumors have shrunk an average of 30%. I'll do another three rounds, scan again after the next two, but will ultimately be having surgery and will have to scan and be checking for the rest of my life.

I think an xray after one chemo treatment isn't the best information. Ct scans are more specific and give accurate information. Don't be discouraged. Continue treatment and wait for a ct scan after a couple of rounds to know if the chemo is working. Tell your husband to hang in there, AIM is tough. I go back tomorrow for round four.


#8

One round is too soon to tell. Don't give up on it yet.
Take care.
Sheryl


#9

The tumors in his lung are very small…9 mm and 8 mm one in each lung. He has already had a left upper lobe removed. Which they told us that the mass was benign until they found it in his bones 6 months later. He has had 10 rounds of radiation at Dana-Farber. We are now at CTCA in Tulsa, OK. The first treatment of chemotherapy (AIM) didn’t effect him at all hair loss but that’s it! WBC was to low this week to get treatment but it’s up so we should be good on Monday. I just hope we are doing this right! I haven’t seen many people with mets to bone. My husband has never EVER been sick a day in his life and I am still in shock! I just know that we have 4 little girls (10,6, twins 18mths) and we are going to beat this I just feel lost…


#10



jsnder said:

The tumors in his lung are very small....9 mm and 8 mm one in each lung. He has already had a left upper lobe removed. Which they told us that the mass was benign until they found it in his bones 6 months later. He has had 10 rounds of radiation at Dana-Farber. We are now at CTCA in Tulsa, OK. The first treatment of chemotherapy (AIM) didn't effect him at all hair loss but that's it! WBC was to low this week to get treatment but it's up so we should be good on Monday. I just hope we are doing this right! I haven't seen many people with mets to bone. My husband has never EVER been sick a day in his life and I am still in shock! I just know that we have 4 little girls (10,6, twins 18mths) and we are going to beat this I just feel lost....

#11

My son was on Ifosfamide for several months and and it worked great till it bothered his kidneys and then we were on votrient for 14 months and it was great as well.


#12

Hi Joe's Mum,

Hope you are all having a great day, what's been lined up for Joe's next treatment?

Lots of love

Karen xxx


#13

What is your husband's chemo regimen? Does he get chemo every week, 21 days, etc.? How do you like CTCA VS Dana Farber? Dana Farber is on my list as one of the possible hospitals for my surgery. I currently am being treated at Northwestern Memorial Lurie Cancer Center in Chicago, but will have surgery at a top sarcoma center. Also, I get a shot atfter each treatment to help with wbc but I go in every 21 days for four days of straight chemo.
Perhaps your husband could get a shot to help as well.


Kazzy said:



jsnder said:

The tumors in his lung are very small....9 mm and 8 mm one in each lung. He has already had a left upper lobe removed. Which they told us that the mass was benign until they found it in his bones 6 months later. He has had 10 rounds of radiation at Dana-Farber. We are now at CTCA in Tulsa, OK. The first treatment of chemotherapy (AIM) didn't effect him at all hair loss but that's it! WBC was to low this week to get treatment but it's up so we should be good on Monday. I just hope we are doing this right! I haven't seen many people with mets to bone. My husband has never EVER been sick a day in his life and I am still in shock! I just know that we have 4 little girls (10,6, twins 18mths) and we are going to beat this I just feel lost....