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Votrient Ordeal


#1

Hello All,

I have been on Votrient since August 2012 and I just wanted to share my experience and perhaps the conclusion of my being on this drug. That wonderful little pill which seemed much easier and uncomplicated than getting infusions has cost me a great deal of my quality of life than any other drug I have ever been on, which have included 10 variety of chemo regimens for sarcomas in the past 21 years. I now see myself in a very difficult cross road as my options are extremely limited. I was admitted into the hospital last week because I was experiencing chest pain. I've always had shortness of breath due to the radiation and lung surgeries, but I never had my chest to feel tight and heavy. I complained about this for months, but was told it was probably my lungs since I have severe restrictive lung disease. When I was admitted to the hospital, I took heart-related tests, as the Drs. thought I was having or perhaps had a heart attack. The tests proved to be negative, but what they did find that was my ejection fraction was low (34%). Normal is 55% and above. This is the percentage of blood leaving the heart each time it contracts.

Some other side effects I have experienced on this drug have included: loss of appetite, weight loss, diarrhea, lightning of the skin and hair turning white all over my body.

What disappoints me more than ever with having this disease is getting the medical professionals to listen to my concerns and not just see them as complaints and to take them seriously. You would think if my Dr. is administering this drug to her patients she should at least be familiar with the serious side effects of this drug, and my concern of my chest being tight and heavy should have triggered some sort of investigation on her part. Once again, I find myself in peril. I've been in this position so many times and I pray for a good outcome.

The lesson learned for me here is to pay attention to your drugs serious side effects and demand some sort of action if you find yourself experiencing them. We know our bodies and we should always follow our instincts. I knew something wasn't right, and every Dr. I told about what I was feeling did not connect the dots!

It's time for me to move on and see what's next. I'm doing my research to see how I can help counteract my new condition as naturally as possible. What's more important at this point is to see what therapies are available for me in order to keep my tumors stable and prevent more metastases.

Blessings to you all and have a beautiful Christmas!


#2

I have read and understand some side effects and chose this Votrient anyway....it seems to be one of the very few remaining treatments with possibility of success for me. I have been taking it for 5 days and have experienced none of the effects I expected or read of. I have however experienced extreme pain in the primary tumor within 12 hours of beginning this treatment and continuing with no let up. I am taking up to 150mg of codiene between the slow release and fast release and it doesn't seem to help. My doctor suggested dilaudid but that never worked for me so I upped my intake of codiene. Has anyone experienced tumor pain upon starting votrient? and how long does it take the other symptoms to begin (nausea, diareha, ect)?


#3

"Fighter"…I am so glad you shared your thoughts on this. Like you, my husband (Dan) has been on a variety of chemo cocktails, since his diagnosis in 2011. All have come with uncomfortable to serious side effects that significantly compromise quality of life. Dan is currently involved in (yet another) clinical trial at Sloan Kettering. We will find out if it is effective when we receive the latest CT scan results on New Year's Eve. I believe the Doctors are all trying to do 'good' by us, however, they become so focused on killing the tumors, that they lose sight of the fact that chemo is poison and kills the good cells as well. Also like you, Dan is beginning to rely more heavily on his 'gut' instincts. He believes the next chemo option (our "Plan B") will kill him. If this cocktail is not effective, he will be seeking out less traditional, more holistic/Eastern practices for treatment options. These decisions are very personal ones to make. And in no way am I judging any decisions made by others to continue with chemotherapy. I just wanted to share Dan's latest perspective…Be well. xoxo Jeanne


#4

My husband experienced horrific side effects from Votrient including tremendous pain at tumor sites, a spleen bleed and then ultimately a tumor in his brain bled. We should have never continued after the spleen bleed but we were at our last option of treatment choices. I know votrient has done wonders for many, but I'm not sure I've heard more good than bad. As far as holistic treatments - if I could go back, I would have absolutely gone this route. What I tell people is that while synovial sarcoma took my husbands life, treatment is what killed him. Focus on the immune system and strengthening it nutritionally. I hate to put some of this info out there, but there is a lot of validity and truth that doctors do not tell you. It is their job to treat with conventional medicines including chemo, radiation, etc. Sorry for the rant on this but I had to share my honest experience and opinion. Best of luck to each and every one of you who continue to fight this vile beast.


#5

Tracey I couldn't agree more. My husband is going to reject additional chemo and do exactly what you have suggested, "focus on the immune system and strengthen it nutritionally". His gut is telling him that additional chemo will take his life long before the sarcoma does. Again…I am not judging those who continue to pursue traditional options at all. These are very personal decisions. But, I completely appreciated your "rant". xo


#6

Your instincts will be your best compass. I’m glad my words could help in some way. Best of luck to you and feel good knowing you have empowered yourselves to make the choices that are best for you. I wish we would have some this more often. Xoxo


#7

I agree Tracey…that's what this website is all about. I so appreciate your openness and honesty. xo


#8

Check out a woman by the name of Kris Carr. I don’t have the website off the top of my head but she had been beating sarcoma for years through just what we are talking about. She has two books that are noteable; crazy sexy cancer and crazy sexy kitchen (I think). I never got a chance to read them but I do get her newsletters and blog posts weekly.

Strength, courage, wisdom…faith, love, hope…wishing this to you!


#9

PERFECT…THANK YOU! Will be sharing with Dan tomorrow….


#10

Tracyb,

Thank you so much! I remember when you lost your husband and thank you for still supporting us on this site. Yes, the conventional treatment is causing havoc on my quality of life and my immune system. I think there is benefit from the conventional treatment, however, I've decided I have to be more focused on keeping the immune system strong like jkopetic as indicated. I used to do acupuncture and I do take supplements like astragulus, curcumin turmeric, vitamin D, C. These support the immune system. It's difficult to exercise, so I'm going to try to get back to my walking routine. My biggest challenge at the moment is my escalated heart rate and shortness of breath. This makes everything more difficult. I'm going to see a new cardiologist next week to see what he recommends...more likely another drug. The bottom line is I don't have control over this cancer, but I do have control over my lifestyle and I have to make a commitment to make the changes...sounds easy, but it's not.

I am being encouraged to know that I'm not alone in this and I thank you all for being such a wonderful support. I think this board is awesome! I can finally communicate with those who have the same cancer I have.

Micheal: It takes a perhaps a couple of months before you start experiencing some of the side effects. I take gabapentin for pain and anti diarrhea pills when it's bad and I haven't had much nausea. But, I find that I now have stomach sensitivity to seafood. It makes me nauseous and gives me diarrhea. So, you may develop some sensitivity to certain foods and this didn't happen to me right away. I hope you do well on this drug. Be sure to drink plenty of water with electrolytes. It recommends at least 2 liters a day.

Wishing you a Merry Christmas!

Keeping Hope Alive!


#11

It's official! I have been taken off the Votrient after 16 months. I spent four days in the hospital because of having a very heavy chest and pain. It was determined that I didn't have a heart attack, but the Votrient was in deed the culprit for the problems I was having. It's pretty scary for me not to be on some sort of chemo regimen and my choices are very limited at this point. My Dr. is considering placing me back on the Yondelis study, however, we have to see if the heart improves; so, we're giving it a month. In the meantime, my tumor tissue is being sent to FoundationOne for genomic profiling to help the dr. to match target therapies for my tumor. I found the website to be pretty interesting. Take a look:

http://www.foundationone.com/

Although, I'm in a precarious position at the moment, I'm praying for a positive outcome. Perhaps this is what I've been waiting for...the battle continues! Hope everyone had a beautiful Christmas!

Keep Hope Alive, 2014


#12

Good luck Gina! I hope you quickly find a new targeted therapy that works for you. I wish you a better year 2014 :-) Keep strong!


#13

Good news to start the year with! Remember I said that my ejection fraction percentage had dropped to 34%? Well, in just two weeks, it has returned to normal after being off the Votrient and taking a combination of drugs (Coreg and Toprol) These two beta blockers addressed the heart rate and the blood pressure. My EF is now 51% and above. Now, to address what chemo regimen is going to be best for me at this point. Happy New Year to all...keep positive : )


#14

Great way to start he year Gina. I hope it's a good omen. Good luck with your search of next chemo. Are you still in the hands of Dr Chawla? Happy New Year!


#15

I had pain at what I knew to be tumor sites when I started. It was significant and pain relievers were not effective. I think I made a mistake by stopping my dosing until the pain went away... I started up again and the pain returned. I continued at my doctors urging and the pain eventually went away and I found the votrient very tolerable. I did experience occasional diarrhea, loss of appetite, and the hair whitening. I was able to stay on votrient for about 9 or 10 month's and then experienced progression. I was on 800 mg through out that time.

Michael Stangel said:

I have read and understand some side effects and chose this Votrient anyway....it seems to be one of the very few remaining treatments with possibility of success for me. I have been taking it for 5 days and have experienced none of the effects I expected or read of. I have however experienced extreme pain in the primary tumor within 12 hours of beginning this treatment and continuing with no let up. I am taking up to 150mg of codiene between the slow release and fast release and it doesn't seem to help. My doctor suggested dilaudid but that never worked for me so I upped my intake of codiene. Has anyone experienced tumor pain upon starting votrient? and how long does it take the other symptoms to begin (nausea, diareha, ect)?


#16

Good morning survivors!

I just returned from Los Angeles and I just wanted to let you know that I'm back into the Yondelis clinical trial under Dr. Sant Chawla in Santa Monica. Starting back in 2005, I was on this regimen successively for 5 years. Went to some other regimens: High dose Ifosamide and then Votrient due to my liver enzymes being too high, One of the tumors became resistant under the Yondelis treatment and I had radiation which affected the liver enzyme level.

The Ifos. was successful, but it was limited due to the dosage administered and I did 7 rounds of 14-days continuous administration. Votrient as I told you started to affect the heart. I'll keep you posted on how I do with the Yondelis again. I will be going once per month to do a 24-hour continuous dose. This makes life a little more tolerable because I'll get three weeks off. At this time, this is where I should be in my life and I'll get used to the traveling again.

God Bless and Keep Hope Alive!


#17

Good luck Gina!


#18

You are amazing,you're such an inspiration!