Nhi on Sutent

[ntran727]

Hi all,

I started a thread about Sutent and will update periodically.

So far, I am on day 6 of Sutent and the only side effect I have is a very slight increased sensitivity in my hands, feet, and tongue. It doesn't happen all the time, just a few seconds at a time when I do feel it throughout the whole day. I don't have cracks/blisters on my hands/feet or mouth sores at all and there is no pain. Like I said, it's just a barely noticeable sensation when I touch something very hot or cold.

I do not have any fatigue, appetite loss, weight loss or GI issues including nausea/diarrhea except for maybe on day 2 (nausea lasting for a few minute that resolved on its own).

My skin and hair is still the same thank goodness.

Overall, medication is very well tolerated and I feel great! Hopefully it stays this way. I will f/u with my oncologist on Dec 1st for blood work to make sure everything is okay. Will post more updates then.

[ntran727]

Week 2 of Sutent:

I began to experience some mild fatigue so ended up switching from taking the medication during the day time to night time (figured I would sleep off the fatigue). However, I noticed that I woke up every morning feeling sick (sort of like a bad hang over) and dehydrated with some fatigue that would get better after drinking some water and eating breakfast. The symptoms progressively got worse that on the 3rd day I had horrible chills and flu-like symptoms, appetite loss, and extreme fatigue. My vital signs were pretty much normal with temp slightly elevated to 99.4 and blood pressure also slightly elevated as well to the 130s/90s on occasion. I spoke with Dr. Schwartz' NP and we decided to hold my dose that night and resume in the morning or afternoon. I took 2 more doses of the medication and had blood work done at the follow up visit yesterday (12/1/16) which showed that my liver enzymes were more than 10x the upper limits of normal (AST/ALT in the 300s). No wonder I was feeling so crappy. We have to hold the medication and now and repeat labs Monday. I will post more updates as they come.

[D.ap]

Hi Nhi
I'm sure sorry to hear of the side effects you are experiencing
Josh had to be taken off sutent after about 6 weeks of taking it. Severe cough and feeling really crummy
We're not sure but possibly a virus too.

You aren't by chance taken a beta blocker of some sort ? Prescribed and or natural ?
Hope you feel better soon
Love
Debbie

[ntran727]

Hi Debbie,

Did Josh stop the medication purely because of the side effects? Did he ever have any abnormal blood work results such as liver/kidney toxicity, anemia or thyroid problems while he was on it or did you guys stop it before it go there? The side effects would have been tolerable if it wasn't for the liver toxicity. I am concerned about going back on the medication since my liver does not seem to like it too much. I am not taking any other medications or supplements and have cut out alcohol completely, so I am pretty sure it is all from Sutent. If the enzymes don't go down on Monday, we will have to do a scan to see if there is another process going on (hopefully not!).

[D.ap]

Hi Nhi
He developed low thyroid over the 6 week period
The CT scan showed Inflammation / growth, and his cough was so severe he broke ribs unfortunately
I'll see if I can locate any liver tests
Would that have to be a specific test or could CBC/WBC
tell you anything?
Enzyeme specific ?
Also Josh has liver tumors and had a 2.5cm ablated 4 months prior to beginning sutent in October 2015 to being DQ in November
So maybe his liver was over loaded while processing sutent?
Regardless we are currently in a good place with our treatment

[ntran727]

Hi Debbie,

Thank you for your response with the detailed information. I guess with ASPS we have to just keep trying until we find the right treatment ie. drugs/surgeries. It is definitely disheartening when something goes wrong every 2 seconds but you have to just keep bouncing back. I am in a much better mood today because I've been off the medication for 2 days now and energy is back! I can't even describe how much I appreciate my old body after going through 3 days of hell. I can't even imagine what Josh has gone through in his many years of fighting ASPS and the multiple side effects he has had to endure. I am so happy that his current treatment is going well. All of my labs were normal including the CBC and thyroid function testing. Only the AST/ALT were elevated and surprisingly not the bilirubins. It is part of the comprehensive metabolic panel. My labs were completely normal and I have never had any liver issues, so I am pretty sure it is from the medication and not due to another process (ie. Liver mets).. hopefully. I still think that because I took the medication before going to bed, I developed more toxicity because of not being able to drink water in the middle of the night and waking up feeling completely dehydrated. Eating well helps a ton when it comes to taking these medications - I have seen the articles you posted about nutrition and cancer and how important it is to maintain a good weight. Anyways, take care Debbie and Josh and I will post updates when I get my labs back next week.

[D.ap]

Nhi
Good morning
It's wonderful to hear of you feeling much better
You are so correct . We have to keep trying. However it's so hard to keep trying when we are feeling so crummy from the meds that we are taking to try and keep ahead of our slow but ruthless sarcoma .

I did find a metabolic test comparison from feb 2015 to June 23, just a month before Joshua's liver ablations

June 2016 Feb. 2015

AST 12 17
ALT. 19 9

Bilirubin .2(L). .5

So I'll try and locate after November labs that would show his liver condition coming off sutent
Have a wonderful weekend !

[ntran727]

It seems that Josh's liver was fine while on the Sutent then. Perhaps his liver was not processing the sutent well after going through the ablation as it is largely metabolized through the liver, but who knows. The side effect profile is always different for everyone, so we just have to hope that it is something tolerable. My AST/ALT were in the 300s. I don't have the exact values yet but that is what they told me over the phone. It is more than 10x the upper limits of normal, so I will have to wait patiently for the enzymes to go down and then go from there. Happy Saturday! I am work ... as per usual =). We just closed on our first house 2 days ago so gotta make some extra bucks especially with the holidays coming. I can't afford to be fatigued now! Have a great weekend.

[Bonni Hess]

Dear Nhi,
Thank you for opening this thread where your Sutent experience and results can be more easily accessed and followed, and for your dedicated updates on your Sutent experience thus far. I am so sorry for the negative side effects which you have begun experiencing, and for your concerning elevated liver enzyme levels. I am grateful that your symptoms seem to be dissipating since you discontinued taking the Sutent which certainly seems to indicate/validate that your symptoms were caused by the Sutent. However, I know that is definitely problematic to you being able to continue to take the Sutent which I know too will be very discouraging for you. I will be anxiously awaiting the results of your tomorrow's lab tests and Hoping that your significantly elevated liver enzyme levels have normalized. If you do decide to continue on the Sutent, I strongly recommend that you request and schedule regular IV re-hydration as Brittany has (bi-monthly for Brittany) to help prevent the severe dehydration, nausea, and vomiting that can be caused by Sutent/Cediranib/ etc. In the meantime, I Hope that you are continuing to feel better and that you are enjoying a relaxing and restful weekend. Take care and keep in touch as you are able.
With special hugs, caring thoughts, healing wishes, love, and continued Hope,
Bonni

[ntran727]

Quick update. I have had blood work done 3 times since the last update and liver enzymes have continued to trend down, now pretty much normal. Therefore, we believe it is secondary to the medication and not another process. My oncologist wants to resume Sutent at a lower dose (25mg instead of 37.5mg) and perform labs weekly instead of biweekly. I will resume the medication tomorrow and update later.

[Bonni Hess]

Dear Nhi,
Thank you for the thoughtful and encouraging update. I am so grateful that your highly elevated liver enzyme levels have decreased and normalized. I Hope that the liver enzyme levels will remain normal when you resume the Sutent at the lower dosage and that the debilitating side effects that you experienced will be alleviated or greatly reduced. As I told you in my previous response, I strongly encourage you to schedule bi-monthly IV re-hydration to try to prevent the severe chronic diarrhea and nausea/vomiting associated dehydration that is common with TKI use. Regular IV re-hydration is the only thing that has enabled Brittany to remain on her Cediranib treatment as her previous frequent severe vomiting episodes which required hospital emergency treatment and hospitalization were taking too great of a toll on her body. We don't understand why this preventative measure is not routinely recommended by the oncologists of patients being treated with dehydration causing TKI drugs. It is something which we figured out and requested on our own after observing that once Brittany received her IV re-hydration in the hospital, her severe vomiting eventually subsided although it usually took a couple of days to get it completely under control, so it made sense that the severe vomiting episodes and suffering could be alleviated with preventative re-hydration PRIOR to the sudden onset of severe uncontrollable vomiting! Once again, it is critically important to be very pro-active with all aspects of treatment and fighting this very challenging disease. With humble apologies to you and your respected profession dear Nhi, we have found that the doctors don't always know everything and that diligent research, pro activity, and assertiveness by the patient and the patient's family are essential.
Take care, keep in touch, and enjoy a beautiful Holiday season.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Nhi
Thanks for the update!
Glad you were able to surmise the problem and now are able to move forward

Love
Debbie

[D.ap]

It seems that Josh's liver was fine while on the Sutent then. Perhaps his liver was not processing the sutent well after going through the ablation as it is largely metabolized through the liver, but who knows. The side effect profile is always different for everyone, so we just have to hope that it is something tolerable. My AST/ALT were in the 300s. I don't have the exact values yet but that is what they told me over the phone. It is more than 10x the upper limits of normal, so I will have to wait patiently for the enzymes to go down and then go from there. Happy Saturday! I am work ... as per usual =). We just closed on our first house 2 days ago so gotta make some extra bucks especially with the holidays coming. I can't afford to be fatigued now! Have a great weekend.

The above values were before sutent
I need to find the during sutent still

[ntran727]

It's been a while since I updated. I have been taking 25mg of Sutent daily for the past 2 weeks. The only side effect I had was dry skin (but it's also freezing out in New York and got better when I was visiting my family in California) and new hairs growing in gray (a few strands only). My labs were good after 1 week on the medication with the exception of the neutrophil count dropping a tiny bit. I just got back my labs from yesterday and it is completely normal including my liver enzymes and CBC. We are going to raise the dose to 37.5mg/25mg every other day for 1 week and repeat labs again. I am hoping that I will continue to tolerate the medication at the higher dose.I am still taking it around 11am between breakfast and lunch so that I have plenty in my system. I have also stopped restricting my diet and just eating anything I can so I can maintain a normal weight. I drink about 80oz of water a day at least which is also helping. I will keep you all posted. Happy New Year everyone!

[D.ap]

Nhi

Beautiful report!
Josh turned gray on his beard and some on his head.

So glad that you are able to move forward with the sutent

Happy New Year to you as well!
With your mention of California it brought to memory a couple of things..

There is a Dr Federman in California who has had patients with ASPS and who could maybe aid in your treatment..

Paper link specific to cancer and TKIs

http://static.squarespace.com/static/51 ... ivals%20Un
Josh had a couple consults with him, and he knows his stuff

Specific to ASPS- Dr Federman
https://www.hindawi.com/journals/sarcoma/2012/428789/

Jen lives there and I'd hope you both could communicate and talk of ASPS and of course any other topics that you both might find

http://cureasps.org/forum/viewtopic.php?f=4&t=798

Love to you
Debbie