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Appreciate any information


#1

I'm new to this board so i hope you will bear with me if anyone has asked this before. I had four rounds of ifos and had to quit because it was helping my lungs but killing my kidneys. I am now started on votrient. Saw my oncologist the other day and feel like he is writing me off because of my kidneys. Maybe it's just me, i don't know if i am getting the best care i can. i live in ohio and travel to michigan . read about huntsman in utah focusing research specifically on synovial sarcoma. I can still travel if i need to by plane or whatever. He told me at the sarcoma conference in prague this year nothing promising on synovial sarcoma which really depressed me. I don't know what to do!


#2

Good morning Teddy. I have yet to go through chemo yet, my doctors started with radiation for me, but I have met several times with my oncologist and he is amazing. One of the nicest people I have ever met and that also goes to say for his staff. I see Dr. John Charlson in Milwaukee, WI. At Froedtert hospital. If you can still travel, I highly recommend this team. Please let me know if you need any other info like #'s etc. Good luck!!!
Martha


#3

From your profile, I understand your tumor was removed surgically. Were the margins clear? How big was your tumor? Do you have metastases? If you are not comfortable with your oncologist's opinion, you should definitely get a second opinion, or even a third. Here are lists of sarcoma centers (there are several in Ohio):

http://sarcomahelp.org/sarcoma-centers.html

http://sarcomaalliance.org/sarcoma-centers/

http://www.curesarcoma.org/index.php/patient_resources/sarcoma_centers


#4

Please call Dr Shaa Haa at Sloan Ketterring in New York. They have the best .I went to 4 top hospitals and was my own advocate. Then I chose my Doctor.I am 17 yr clean now. Synovial sarcoma in my neck.I pray that you search out all opinions and then make the choice you feel is best.In my prayers. Marie DeMari


#5

Doctor Richard Hayden saved my life. He was at UNN.of Penn in Philadelpha..When all other Doctors were so negative ,He gave me hope.Surgery then radiation. Dr Shaa at Sloan told me to go to him because I was closer to Philly than New York and that Dr Hayden was one of the best.He Is from Canada.Dr Hayden is now at Mayo clinic in Scottsdale Arizona.

If you can see him he would be honest and over the best.Look him up online.


#6

yes i do have mets to both lungs asoften happens with our type of cancer even though the margins were clean


#7

Are the kidneys also preventing surgery? Can you get anesthesia? How many lung mets? How big are they?


#8

I also recommend you get a second opinion. I live in Florida and travel to Sloan-Kettering in NYC, my team of Dr.'s are Dr. Keohan (oncologist), Dr. Singer(surgical oncologist) and Dr. Bains(lung surgeon). If you need any numbers or have any questions, just ask

Liz


#9

You must have confidence in your medical team and if you have don't consider switching. As suggested above consult with one of these good options. Also I think you should get in the face of your current oncologist and share with them how you are feeling and question them on the recommended (or lack of) approach. They may have more to offer once challenge. Don't be passive and wait for something to happen. Save you own life and to do this you need to partner with a medical team whom you trust and whom give you hope. Goodluck I hope it goes well. Gary


#10

thanks to all who replied with the names of specific docs and where they're located. I have to give the votrient a chance, it's only been one month. i guess i want reassurance that my oncologist is doing the very best he can for me. As we know, there are so many sarcoma subtypes and i want someone with the most experience with mine. During one of my chemo infusions with Ifos one nurse and i were talking and she said a lot of people go to M. D. Anderson for a second opinion and that they collaborate together. I might do this also. Was just hoping to hear from anybody with first hand experience from the Huntsman Sarcoma Team. If anyone wants to share their experience about Andrson I'd love to read it. Again. thanks !


#11

I found that a lot of people on this site had good luck with votrient. It was a treatment my neice did not get so I can't comment personally. Besides who you are seeing, I found it important to have a balance between seeing if a treament works and finding out if it is not. Now it seems like the doctors should know what time should be given to allow to see if this treatment is working for you and I am not saying you should cut that short. The waiting is difficult. The only this I suggest is ,if they are planning a scan a certain week or something make sure it is the monday of that week, not wed not friday. These are days you could be doing the next thing that may work. Dont ever wait for them to call you. Plan these appointments ahead so your always at the earliest opportunity for everything.


#12

Thanks Ziasper for the encouragement and advice. My scan is in January, 9 weeks after starting. I hope and pray to be one of the ones with good luck with Votrient. My scan is on a Thurs along with my appt. I don't know if i can switch depending on when my oncologist has clinic. I know what u mean about having to wait till monday to start something. My deepest sympathies to u and your niece's family. Ifosfamide was rough on me also; i suffered acute kidney injury but it was very effective on the nodules in my lungs. Some totally disappeared and others shrank drastically. Oncologist was very pleased so he gave my kidneys a break from the ifos. Unfortunately during that interim i developed new very small nodules which is why i am on votrient.


#13

THis website is nice because a lot of people have discussed topics about votrient so you should stay well informed here. There are people here to ask any sort of questions to. Keep me updated if you want, about how you are doing. Stay strong and when you are able, eat. If you can eat three times what you normally would so if you are on something that is working against your weight and strength, you are ahead of the game!


#14

Hi Teddy. I assume that Mesna was given (a kidney protectant) along witht he ifosfamide. MD Anderson is wonderful! We travelled there from New York State and were very pleased. They now colaborate with our doctors back here. Good luck with your scans on the 9th.


#15

Thanks Ellen for your input and concern. Yes I did receive Mesna and my urine was tested for blood before each administration. What specifically made you decide to go to M.D. Anderson rather than Memorial Sloan-Kettering which is closer, if I may ask? I've heard that Anderson is the top place for pediatric osteosarcoma.