Nhi from NY - Dx June 2016

[ntran727]

Hi Olga,

Thank you for your response. I think it is interesting too that the dose varies so much. I have been reading on the RCC forums with patients being on 50mg of Sutent. Some of them stay on the 25mg dose for years and able to maintain stability. After taking the medication for 8 weeks, I can tell right away if there are some toxicity whether it manifests in the hand/foot syndrome, my gums or sometimes I do get more fatigued and have loose bowel movements. When I had the liver toxicity, I was feeling fatigued for 3 days in a row before I became very sick. I did have my thyroid function test done 1 month ago and it was normal. I believe that usually thyroid dysfunction tends to appear after being on the drug for a longer period of time. The rest of my labs have also been stable with slightly low WBC and neutrophil count. Even my blood pressure has not been elevated, but it was borderline high 130s-140s/80s-90s when I was on the 37.5mg dose. At the lower dose and every other day dosing it tends to be around 120s/80s. I normally have very low BP around 100-110s/60s-70s so I guess there is a slight elevation if you compare it to my baseline. It would be very useful to know if the 25mg dose would achieve the same results because the side effects are almost done with that dose (for me at least). I will bring it up at the next visit and see if there is any possibility in conducting the study. I also think that it has to do with how each individual is able to clear the drug and maybe has something to do with weight? I also wonder why ASPS patients don't take it like RCC patients do with the 50mg dose 4 weeks on 2 weeks off cycle.

[Bonni Hess]

Dear Nhi,
Thank you for your very thoughtful detailed update with the wonderful news of your VERY good and encouraging scan results . I am SO happy for you and share your great joy, relief, and strengthened Hope . I am grateful that you are continuing to tolerate the Sutent relatively well thus far with none of the common very debilitating side effects of diarrhea, nausea, vomiting, and fatigue usually associated with TKI treatment. Perhaps your reduced and alternating dosage is contributing to better tolerance of the drug and less side effects. It will be wonderful if you can continue to have a successful response to the Sutent on a reduced dosage which helps to alleviate some of the harshest side effects. When are your next chest/abdominal/pelvic scans scheduled, and how often are you having a brain MRI and bone scan? I am so deeply grateful for your thoughtful and detailed sharing as shared anecdotal treatment information continues to be one of our strongest weapons in fighting this very challenging and unpredictable disease so that we can all learn and benefit from each other's experiences. Take care dear Nhi, have a very good, relaxing, and celebratory weekend, and know how deeply I share the great joy, encouragement, and strengthened Hope that your good scan results bring.
With happy hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[ntran727]

Hi Bonni,

My oncologist wants to repeat CT chest in 2 months. We will do bone scan and MRI brain annually (so around June I will need both tests). Abdomen I think is fine to do every 6 months as long as there are no new mets and as long as I don't have any symptoms. My oncologist is very flexible and says that it is a team effort so I usually just do my own labs while I'm at work and send them the results. Also, I work in the same building as the imaging center through Columbia, so I usually sit down with the radiologist to look at my scans right after they are done. It definitely helps to ease some of the anxiety of having to wait for scan results. We will do blood work every 4 weeks now unless I have symptoms.

[Olga]

Nhi, hi, is it necessary to treat the thyroid dysfunction if it is relatively mild? There is some idea that a bit lower rather than normal levels might be beneficial for the cancer patients. And Deb posted some interesting relevant article today:
http://www.cureasps.org/forum/viewtopic.php?f=3&t=1349

[ntran727]

Hi Olga,

That is a very interesting study. We decided to treat it because I was having symptoms (cold intolerance, some fatigue, very dry skin/hair) and my TSH level was 17.02 (upper limits of normal is usually around 4.5). We don't treat if the TSH is mildly elevated between 5-10 but mine was very high. I do feel a lot better actually since I have been on it aside from some side effects in the beginning such as nausea and some palpitations. My EKG was normal and I feel like my energy is better, skin is less dry. However, I am not sure if it is because I have only been taking 25mg of Sutent daily for the past 10 days or so. I just wanted a break from all the side effects which was getting severe like the very bad stomach aches. I also wanted to see if the 25mg would work (sort of experimentally) so I think I will stay on this dose until my next scan. I hope it works at this dose as it is much more tolerable.

[Olga]

I would check the Thyroid levels again because after you lowered the sutent dose they might be normal now, it is not in your best interests to have an oversupply of this hormone given the hints from these studies.

[ntran727]

We are repeating the levels 3-4 weeks from start date and likely frequently along with regular labs to get the levels right. Of course if it is normal or too low, we will cut the medication. I am on the lowest dose possible currently. It is all subject to change including the sutent dose. I mainly want to stay on the lower dose to see if it will work.

[D.ap]

Sure sounds grounded Nhi
I hope it helps with symthoms
Dry skin sucks and hurts
Please let us know of trip up dates when u return or when u feel the need. Australia sounds awesome.
Thanks for the info for moderate standards of thyroid levels . I'd of never researched and understood.
Love
Debbie and fam

[ntran727]

Hello everyone,

I had an updated CT chest on 3/22 and visit with oncologist yesterday. Here are the results:

Decreased size of a few lung nodules as follows:
3x3mm subpleural RML nodule, previously 5x4mm (originally 8x7mm)
3x3mm subpleural LLL nodule, previously 4x3mm (originally 7x5mm)
Otherwise, several (approximately 14) nodules measuring between 1-4mm scattered throughout the lungs are stable.

Quick recap. I have been taking the medication for a total of 4 months, initially at the regular dose of 37.5mg x 2 weeks, then stopped for 2 weeks due to liver toxicity, resumed at every other day 37.5mg/25mg, then spaced to 37.5/25mg/25mg because of stomach pains/gum bleeding and infection/feet pain and eventually I just gave up and took the low dose of 25mg daily for the past 6 weeks or so. I also stopped the medication for 3 days at the end of our Australia trip because my feet were killing me from all the hiking. I was amazed at how quickly the feet returned to normal after stopping the medication for only a few days. Even though I resumed the medication, I feel like my feet got a "reset" and they feel great now.

My oncologist is very happy with the results because although I am taking the medication at the lower dose, there is still improvement in my scans. He also thinks that I am one of the better responding patients. Seems that the medication is working on the largest nodules and the rest of the smaller ones have not changed at all. Likely they are present but not active and some may be scar tissue/necrosis. Only time will tell.

I had labs done a few days ago, still stable with no new abnormalities. Thyroid levels are back to normal now on the lowest dose of synthroid. I feel awesome overall and not suffering from any side effects at this point. Australia was amazing and very needed R&R for my husband and I.

Plan is to continue Sutent at lower dose of 25mg daily until next CT chest in 3 months.
Brain MRI will be done in May (1 year from previous).
I will continue on synthroid 25mcg and monitor labs - we will discontinue it if the levels are off.

2017 is looking good so far! Hope everyone is doing well.

-Nhi

[D.ap]

Nhi
The news is awesome !
Shrinkage by half is amazing .
Sharing in your joyous news

Love
Debbie

[ntran727]

Hi everyone,

I had my 3 month CT CHEST on 6/22/17 and had oncology appointment with Dr. Schwartz the same day. Results show stable nodules measuring between 1-4mm (about 14 visualized) with NO NEW nodules identified. I also had brain MRI in May (1 year scan) that was normal with no signs of metastasis.

I am still on Sutent 25mg daily, but have been taking a 1-2 day break every 2 weeks approximately, sometimes more breaks if I am having more side effects. My oncologist is okay with this as long as I am not on an extended break so 2-3 days would be maximum. I never take more than 2 days off though due to the fear that it will be out of my system completely. Side effects now are mostly rib/muscle pain in the chest wall and my feet. You can see my post in the sutent thread if you wanna see more details.

My onc is very happy with results and think maybe some of the tumors are necrotic but no way we can tell, so he wants me to stay on the Sutent for now at the same dose. We will repeat CT chest in 4 months along with abd/pelvis this time.

I am doing great aside from the minimal but annoying side effects. Still working full time and enjoying my life to the fullest. I am reading all of your posts even though I am not responding. I am thinking of you all!

Have a wonderful day,

Nhi

[Olga]

Nhi - thank you for an update. Your experience with TKI Sutent (sunitinib) is very interesting as your mets are very small and we hope it is be more effective on a smaller size and overall tumor load.

[D.ap]

Hello Nhi

Stable is certainly a reason for sigh of relief .
Can a PET scan show a necrotic scan of the lung tumors?
You had mentioned that Dr. Schwartz felt the likely hood that some of the lung mets were necrotic .

With our useage of immune therapy with Opdivo , it was explained to me that that checkpoint inhitor would show up as VERY active on a PET scan. It was my understanding as a result of the immune system be unleashed of the tumors ?

So , my summation would be that targeted therapy possibly wouldn't ?
I guess both would show a metabolic light up ?

So, so happy for your news .

Love
Debbie

[Olga]

PET would not show any lung mets of this size at all.

[ntran727]

I agree with Olga that the mets at that size would not show up on the PET scan plus there is no reason to do it as long as they aren't growing. It is hard to say whether they are necrotic or just inactive at this time because of the Med. It is also hard to know if the lesions stabilized after some time has passed from when my primary was resected because of the initial "rebound growth" that we suspect happens after removal of the primary. I started sutent pretty quickly so I won't know the actual rate of growth besides that first month that I waited to freeze embryos. I have been doing well and just ignoring my foot pain. The foot pads and wearing comfortable shoes help. I have been going to the gym 4-5 days a week and doing yoga 2-3 days a week and I feel great!