Nhi on Sutent

[ntran727]

Hi Debbie,

The blood pressure was only elevated on the higher dose of sutent when I was taking 37.5mg every day. Since then, my blood pressure has not been an issue. It's interesting that my thyroid is off now because I remember that study that I think Olga mentioned where patient have better response to the medication if they become hypothyroid on Sutent. Hopefully that will be the case with me and it will continue to shrink my tumors. I am also hoping the 25mg will work because the side effects are much more manageable at that dose.

Thank you I can't wait to have a nice 2 week break!

Take care,

Nhi

[D.ap]

Nhi
Truly glad to hear of bp back to normal
Here's the link to article

http://www.cureasps.org/forum/viewtopic ... dism#p2621

You are first line treated right Nhi and are TSH labs performed with each first and last day of sutent ?

[ntran727]

Hi Debbie,

Thanks for the link. Since we are doing continuous dosing, the levels are not checked on the same schedule as for the RCC patients. We only checked it once in December and I added it to the labs myself this time because I thought it had been a while. Now we have to monitor it because I'm on levothyroxine, likely will be repeated in 3-4 weeks from start of medication.

[Bonni Hess]

Dear Nhi,
For some reason your last update was posted in the Personal Updates topic instead of this Systemic Treatment topic and TKI/Sutent subtopic, but I am so grateful and happy that you received continued very good and encouraging results from your end of March scans after you returned from your Australian honeymoon trip I Hope that you are continuing to tolerate the Sutent relatively well on the reduced dosage. It will really be interesting and invaluable to find out if Sutent can be/remain effective at a reduced dosage so that other patients who have difficulty with the higher dosage side effects might be able to try a reduced dose. I read your recent post on the Facebook site and am grateful that you are graciously reaching out to share information and support with those ASPSpatients/families who for whatever reason don't participate on this CureASPS Forum despite the repeated urgings of myself and other CureASPS members to do so.
My very best wishes and special thoughts will be with you for very good results of no brain mets from your upcoming annual brain MRI in May. In the meantime, please take care dear Nhi, keep the Board updated as you are able, and enjoy a wonderful Springtime filled with the special beauty and joy that this season of bright new beginnings and warmer weather brings .
Sharing the special joy of your continued very good scan results with special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[ntran727]

Hello everyone,

I had my brain MRI on 5/23/17, looks clear with no metastasis!

I have been continuing on Sutent 25mg daily. The issues I get now are mainly feet pain and pain in the thorax. I initially thought that I was having stomach pains and tried antacids like nexium, zantac, but none of it seemed to help. I realized that I was getting a lot pain in my rib cage in the front going all the way to the back. The pain would be random, usually occurring 1-2 times/week, sometimes really severe making it hard for me to function. I talked to my oncologist and he suggested taking ibuprofen, which I did and it seems to take some of the pain away. I have been having to take 1-2 day breaks from time to time (on average once every 2 weeks or so) when my feet pain gets really bad and when the rib pains seem to be happening more frequently. It sucks to be on the medication but I have to just deal with it. Labs have been normal and I am still continuing on the synthroid. Last TSH was borderline hypothyroidism, but I am still on the same dose.

My next CT chest will be in 1 month (3 months scan) so hopefully there is still some tumor shrinkage.

Oh what I would give to have a normal day without being on the medication. I am still doing yoga which I love but sometimes it is hard because of my feet pain and it makes me more sore muscle wise - seems more intense than usual probably because of the medication.

[Olga]

Hi thank you for an update. Sorry to hear re. side effects taking a toll on you QOL. I would suggest to investigate the rib cage pain a bit more as we had few ppl with the rib metastasis. May be some add scan just to make sure there is nothing there.

[D.ap]

Nhi
I am sorry to hear of the pain issues as well.
In reading of side effects of sutent and , synthroid ? , it looks like both could be the culprit . However , Olga's suggestion is an excellent one in that it eliminates a possible rib met , as the cause of your pain.
You mentioned your thyroid levels are beginning to wane towards the hypo side again? Do you get your T3 levels checked as well?
Just a thought as they are just as important as the T4 testing , is my understanding .

Hope you are able to feel better soon

Love
Debbie

[ntran727]

Hi Olga and Debbie,

Thanks for your responses. I know the rib pain isn't from mets because it isn't exactly in one spot, just a whole wave over my whole upper body from the abdomen to the neck and correlates with when I take the medication. It always occurs about 2-3 hours after I take it and I notice it more when I've been taking the drug for many days in a row. When I get a 1-2 day break from it, I am completely back to normal without any pain anywhere including my feet. I am due for a bone scan anyways, so probably will just do that and CT chest can also detect some rib abnormalities too if any. My oncologist told me that I can take 1-2 day breaks frequently if I need to and it is better to do that than to stop it for a week so. I have been taking breaks maybe once a week or once every 2 weeks. I ordered these cushions for the ball of my foot and some yoga socks so we will see how they work for my feet. I use a foot callus remover (microplane foot file) that works really well when calluses build up. I think it's mainly because I live too "active" of a lifestyle and my feet suffers from it I also suck it up to wear cute shoes from time to time which doesn't help, so part of it is my own fault. I refuse to let it take me down!

The thyroid levels were VERY borderline hypo, so I think current dose is fine and I feel fine energy wise so no need to adjust for now. I am so anxious for the next CT chest to see if the medication is still working on the lung mets.

[Ivan]

Any updates on your treatment?

[Olga]

It is in Nhi personal updates
http://www.cureasps.org/forum/viewtopic ... 3&start=60
and per her latest post (last month) she is doing very well!

[D.ap]

Mon Feb 26, 2018 2:51 pm

Hi everyone,

It is that time again for my scans and oncology appointment which I had today. I only had a CT chest this time as the rest of my scans are not due until May. The Chest CT is once again stable with the same 2-3mm lesions in both lungs, no new growths and no changes in size. This is the 3rd scan that has shown stable disease over the course of the past almost 1 year, so this is great news!

I am doing okay on Sutent, still taking 25mg daily with small breaks here and there, about 4-5 times a month on average when I feel it building up in my system. It manifests in different ways from feet pain to diarrhea to chest wall pain (the same symptoms I have been dealing with). The worse is the chest wall pains I would say as it is pretty awful when it comes on. Ibuprofen and heat pads help and I am usually back to normal after about 12 hours per episode. They happen severe about 4-5 times a month and mild about once a week I would say. Because of this side effect, my oncologist is going to try to lower my dose to again to see what happens. I will be taking 25mg and 12.5mg every other day and get scans again 3 months from now including another chest CT as he is changing my dose.

I will also be getting my annual MRI brain, 6 month abdominal/pelvis imaging which we decided on MRI instead of CT this time to reduce the radiation, plus it would evaluate my primary site (right buttock) better. We spoke about the bone scan which he does not think is necessary as the bones are also visualized on CT/MRI (aside from my extremities). I did try to push for it, but since my disease is pretty stable and I don't have any pain in my extremities, I felt that this was okay for now as he seemed to really think it was not necessary.

http://www.cureasps.org/forum/viewtopic ... =60#p11810

[D.ap]

Is your doctor thinking the pain is caused by a rebound /withdraw type pain from the up and down dosing of the sutent ?
Are you still on low doses of thyroid med?

http://www.ascopost.com/News/17458

[D.ap]

Nhi and Jen :)
One last paper to consider with your bone ? pain

http://www.cureasps.org/forum/viewtopic.php?f=2&t=1418
Calcium depletion after TKI therapy (use)
Normally at your age you wouldn’t even need to think of this possiblity ?
Food for thought

[Olga]

Deb, why do you think that a the chest wall pains originated in a bone? I actually though to myself that the symptoms they both described were very similar to Ivan's after thoracic surgery intercoastal pain syndrome, when the intercoastal nerve is inflamed.

[D.ap]

Hello Nhi and Olga

I was thinking ribs? However it looks like thyroid replacement can cause pains of the “heart”

“Thyroid disease may directly effect the heart especially whenever the thyroid gland is overactive. This may produce symptoms of palpitations, heart pain, or heart failure. Similar symptoms may occur with an underactive thyroid if it is treated too rapidly with thyroid replacement therapy.”

http://www.thyroid.ca/e6a.php

Nhi I would imagine knows of referred pain . However the inter coastal nerve is a definent pain that radiates . Imitates a heart attack like pain I believe ?