I just started taking Votrient yesterday after enduring 6 rounds of 14-days of continuous Ifex each month. It didn't make me sick, but I had a tremendous amount of anxiety bc of the dexamethazone which I received 3 weeks out of the month. So very glad to be done with that. I'm praying that the Votrient works. I used Gleevec before and I had stabilization of my tumors for 2 years. Just need more time for new research and discoveries since I have pretty much exhausted the chemos for SS.
I'm a little concerned about the high blood pressure side effect of this drug since it was reported as the highest percentage in the common side effects in studies. Anyone having been on this drug, I would love to hear from you about your experience.
We are going to be starting Votrient as well but are waiting for insurance approval, which should not be an issue (I am fortunate to work for a very large company with excellent benefits thank goodness). I’m glad to hear your side effects have been minimal, and hope for a great response. My husband has been through doxi/ifos, Trabectedin, and phase 1 trial of t-cell immunotherapy. The first two were not successful while the t-cells showed mixed results. The trial is on a pause right now so we are going to Votrient as the next treatment. We have been fighting for just over a year and have endured not only the above treatments, but also radiation on the largest tumor (life impacting reasons) as well as two gamma knife treatments for brain mets. Please keep us posted on your experience and progress with Votrient and we will do the same.
I'm on day 4 of the Votrient. So far, so good! I take 4 tablets a day (800mg). I had just finished Ifex 3 weeks prior, so I think I'm still experiencing some negative effects from that treatment...brutal. The fatigue and shortness of breath I experience from this treatment was almost intolerable. I've read comments from patients on Votrient in which they had to reduce their dosage due to diarrhea. So far, I haven't had a problem. I was on Gleevec for two years and it eventually stopped working and I loved it. I have literally been on every treatment for SS bc I have been doing this for twenty one years. I hope your husband does well on the Votrient. I'll keep posting my progress. Thanks for responding. Looking forward to hearing more.
Gleevec (Imatinib) is protein-tyrosine kinase inhibitor Like Votrient. It works by blocking the action of the abnormal protein that signals cancer cells to multiply. It helps by stopping the spread of cancer cells like Votrient. Here is a good link that gives more details about he drug.
THanks for the info and shifting your story. The fact that you have been fighting for 21 years gives me so much hope! Have not heard of Gleevec, but am hopeful that the votrient will hold things at bay for a long time, and hope it is tolerable to my husband’s system. Insurance approved the drug so we’ll be starting soon. I’ll keep you posted and please do the same.
Tracey
imaFighter91 said:
Hi Tracey,
I’m on day 4 of the Votrient. So far, so good! I take 4 tablets a day (800mg). I had just finished Ifex 3 weeks prior, so I think I’m still experiencing some negative effects from that treatment…brutal. The fatigue and shortness of breath I experience from this treatment was almost intolerable. I’ve read comments from patients on Votrient in which they had to reduce their dosage due to diarrhea. So far, I haven’t had a problem. I was on Gleevec for two years and it eventually stopped working and I loved it. I have literally been on every treatment for SS bc I have been doing this for twenty one years. I hope your husband does well on the Votrient. I’ll keep posting my progress. Thanks for responding. Looking forward to hearing more.
I've been on the Votrient since Aug. 26th. I have developed high blood pressure, so my doctor prescribed a low dose of Lisinopril. It appears to be helping. I just noticed yesterday I'm losing my taste and eating is becoming a problem. I can't afford to lose anymore weight, so, I'm forcing myself to eat and drink high calorie protein drinks. My appetite is also stimulated when I walk the pool and go briefly into the steam room...this helps my lungs as well. I'll probably have a CT scan at the end of October to see if I'm still stable, but so far, so good. I love taking the pills...what a blessing vs. getting infusions! Oh yes, I started acupuncture last week to help with the peripheral neuropathy in my feet which was brought on by the Ifosamide treatment. I truly hope this resolves as having numb feet and toes is no fun!
I wanted to share a quick update on our experience with Votrient. My husband started taking the drug on September 9. On the evening of September 10, he had some extreme pain in his stomach, which we thought was just a side effect of the drug. We ended up going to the ER at 3AM because the pain was so bad. It turned out he had a tumor in his spleen that ruptured. We don't know if the Votrient caused this or not, but we had to stay off of the drug until the spleen issue was dealt with and cleared up. He started taking the drug again on September 26 and so far so good. Very little side effects, no blood pressure or elevated liver enzyme issues. His tumors seem to be in more pain which his doctor did say could happen. The drug is making the tumors mad we hope :-) Have you experienced an inflamed tumor pain on this drug? How is it going for you since you've been on it since the end of August? Have you had scans to indicate what impact the drug is having on your tumors?
Thanks in advance for any info you can provide. Wishing you well!
I'm glad to hear your husband was able to resume taking the Votrient. It's so much better than getting infusions. Now that I have been on the drug a couple of months, I'm noticing more side effects. I do have the tumor pain you're talking about...took me a while to realize it was from the Votrient. My hair is turning white all over my body...strange and the pigmentation of the skin is changing. I also have some muscle and joint pain when I'm not hydrated enough. It does say to drink lots of water with electrolytes. Sometimes I will have a headache, loss appetite, rapid heart rate and fatigue and weakness. When I'm feeling exhausted, I just take a nap and afterwards, I'm good to go. I'll probably get my next scan at the end of October to see what response I'm getting. I pray that I continue to be stable, but shrinkage would be nice too!
I'm a freelance writer and I'm currently researching a feature story on sarcoma for Cure magazine. I read your story here, and it seems like you have experiences that would really benefit the Cure readers to hear about. I wonder if you'd be willing to be interviewed for my article? This would entail one phone conversation (usually 45 min or so) and maybe a follow-up question or two by email. The article will use your first and last names, so you would have to be comfortable with that. I really just want to hear about your diagnosis and treatment as well as your experiences along the way (what keeps you strong, biggest challenges, etc). Please just let me know if you're interested. You can contact me here or directly via email at ■■■■■■■■■■■■■■■■■■■■■■■■■.
Hi Heather - did you want to speak with Gina or myself/husband? Just trying to clarify specifics for your article. We’re happy to participate, and you can get some background on our blog at www.blackburn-us.com where we have chronicled our ups and downs over the past year since diagnosis. It’s fine if we are not right for your story, so please just let me know. My husband and I have actually just started an initiative around sarcoma awareness so if I can provide background for your story, rather than being interviewed, I’m happy to do this as well. Whatever you need…
Sorry for any confusion! I would need to talk to the sarcoma patient directly--I will also look at your blog when I have some time! Can you give me a super-brief run-down of diagnosis/treatment?
thanks!
Traceyb said:
Hi Heather - did you want to speak with Gina or myself/husband? Just trying to clarify specifics for your article. We're happy to participate, and you can get some background on our blog at www.blackburn-us.com where we have chronicled our ups and downs over the past year since diagnosis. It's fine if we are not right for your story, so please just let me know. My husband and I have actually just started an initiative around sarcoma awareness so if I can provide background for your story, rather than being interviewed, I'm happy to do this as well. Whatever you need...
My husband is the patient, and here’s the brevity…stumbled upon two tumors in his lungs size 13cm and 5cm. Uncertain of main tumor site but suspect lower flank tumor. He’s diagnosed at stage 4 with metastasis to the lungs and have experienced brain mets that have been treated with gamma knife successfully. He’s done doxi/ifos, trabectidin, phase 1 clinical trial with t-cell immunotherapy, radiation, all with little success. We are on votrient now with hopes of slowing progression. We won’t know results of votrient for a few weeks yet.
More details in the blog, and hopefully this helps. I am sure there are many patients in this forum who would be happy to share their story.
I would very much like to speak to your husband for the article if he's up for it. They specifically want me to speak to someone who is taking (or has taken) Votrient. Have the docs mentioned the possibility of any other clinical trials?
We are waiting to see the impact of the Votrient prior to discussing any other clinical trials. And my husband Ed would be happy to chat with you. Let us know when a good time for you would be.
My Dr. reduced my dosage of the Votrient from 800mg to 600mg. due to my WBC being low last week. I did two shots of neupogen and the counts did come up. I'm wondering though if reducing the dosage takes away from the effectiveness of the drug. I suppose its better to be on something rather nothing at all. I always get in trouble when I'm not on some sort of chemo. SS is like a nasty little weed just waiting for the chance to show up somewhere else.
Bad news on this end. Ed lost feeling in his arm the other day and it turned out one of the mets in his brain bled impacting motor skills in his right side. We think the votrient was the culprit because a tumor in his spleen ruptured about a month ago. We don’t know anything with certainty, but it appears the votrient is probably the cause. We are in the hospital now and and doing whole brain radiation in hopes of controlling the bleed so he does not lose any other motor function particularly in his leg. He is now at the point where he is done with conventional treatments. Every treatment he has done has made him worse and has had no impact in stopping this vile beast SS. I’m not sure about what comes next, and yesterday he wasn’t sure he even wanted to do the brain radiation, but he considered this a “hail Mary” in getting back to a somewhat normal state. Things are very emotional right now as you can imagine. I am so hopeful that votrient works for you and anyone else taking its I have heard it to be successful. Best of luck!
Tracey, I'll be praying for you and Ed. I know the emotional state because I have been there before. It's a very scary place to be in. During those times, I draw on my spirituality for strength and peace. I have been in situations when it was all bad...and I do mean horrific! Tell Ed to not give in and be determined to have a fighting attitude!