Nhi on Sutent

[ntran727]

Hi Debbie,

Thank you for the information. I currently live in New York but my mom, brother and sister living California. We are going to stay put in New York for now especially since we just bought a house but I will keep this information in case I end up moving to California in the future. I know Jen is there as well, so I am sure we will communicate if needed.

[Bonni Hess]

Dear Nhi,
Thank you for your thoughtful and encouraging update. I am grateful that the negative side effects from your Sutent treatment have thus far been fairly minimal and that your labs have been good. I share your Hope that you will tolerate the higher dose of Sutent well so that you can continue on the treatment regimen without any further interruption in taking the full dosage of the drug. I am glad that you are maintaining your hydration with at least 80 ounces of water daily which is very important as a preventative measure against severe dehydration caused headaches and vomiting that can be associated with Tyrosine Kinase Inhibitor use.
When are your next scans scheduled to try to determine the effectiveness of the Sutent in stabilizing the progression of your disease and shrinking/destroying your mets?
I Hope that you enjoyed a wonderful and warm Christmas holiday with your family in California, and that the rapidly approaching New Year 2017 will bring you strengthened Hope and healing.
Take care and keep the Board updated as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[ntran727]

When are your next scans scheduled to try to determine the effectiveness of the Sutent in stabilizing the progression of your disease and shrinking/destroying your mets?

Hi Bonni, thanks for the good wishes. The plan was to repeat the scans 6-8 weeks from the start of the medication. I have been on it for a total of 4 weeks now not including the 2 weeks I took off from the medication. I have to discuss with my oncologist at the next appointment on 1/12/16 with when to do the scans but I am assuming some time in the first week of February? I will let you know when I find out.

[Bonni Hess]

Thank you for your very prompt response and additional imformation dear Nhi. My special thoughts and very best wishes continue. With warm hugs, Happy and Healthy New Year's wishes, and continued Hope, Bonni

[D.ap]

Hi Debbie,

Thank you for the information. I currently live in New York but my mom, brother and sister living California. We are going to stay put in New York for now especially since we just bought a house but I will keep this information in case I end up moving to California in the future. I know Jen is there as well, so I am sure we will communicate if needed.

Hi Nhi
Knew all the above
Never too many cooks in the kitchen with doctors and bringing to the table what is known especially with a VERY rare sarcoma .

Just wanted to let you know of a resources to pick proverbial brain.
Truly so glad for your advancement with your treatment .
Love to you

[ntran727]

Hello,

Time for another update. I have been stable on the alternating dose of Sutent 25mg/37.5mg every other day for a little over 2 weeks now. Labs have been normal with liver function and all. Neutrophil count is teetering back and forth but not below 1000 which would be cause for concern. I saw my oncologist yesterday, plan is to stay on current dose for another 2 weeks and then we will do CT chest/abd/pelvis with and without contrast to see if medication is working.

Side effects wise - energy level is good for the most part with some days of feeling more fatigued than other days. The most bothersome symptom now is pain in my feet. Seems that I have developed the classic "hand and foot syndrome" from the medication with painful calluses on the sole of my feet at the pressure points making it difficult to walk. I have to wear well cushions shoes and even slippers at home with socks. Walking barefoot is not an option. As I was reading about sutent, seems like this develops within 2-4 weeks of being on medications and special care should be taken to prevent the calluses from developing. I did not know that and of course was walking around Christmas shopping for hours in uncomfortable shoes which is what caused the calluses to form in the first place. They did not bother me when I was on the lower dose but now with the higher dose they won't heal. I have started using Urea cream 40% and my oncologist told me to add a little bit of clobetasol ointment as well. We will see if this works. If not, we will have to temporarily lower the dose again until it gets better. I just want to hang on for a little bit longer to get the repeat scans and then if it is very intolerable, we will just have to lower the dose. I also have more acne and skin irritation than usual along with the normal tongue soreness and sensitivity to hot/spicy/salty foods.

I can't wait to get the scans to see if it is working at all. Going to stay optimistic

[D.ap]

Morning Nhi
I'm sure sorry to hear of your foot hand syndrome issues
I was wondering in addition to creams if diabetic socks might be in order to help prevent infection ?
So your Neutrophil levels have been on the low side ?
Next week you'll get additional blood work , right ?

I hope you are able to get the creame to help and find the foods that are palatable .
Love
Debbie

[Bonni Hess]

Dear Nhi,
Thank you again for your faithful updates and valuable sharing of your Sutent treatment experience and side effects. I am grateful that your lab and liver results have remained normal on the increased alternating Sutent dosage. As I am sure that you know, the mouth sensitivity and debilitating Hand Foot Syndrome symptoms are unfortunately common side effects of TKI treatment. Brittany has suffered with both, although the symptoms have very thankfully but inexplicably been greatly disippating and she is now able to even eat slightly spicy foods when she initially couldn't even tolerate ketchup or children's toothpaste, and she is doing lots of walking and actively skiing when previously she was barely able to walk due to the thick callouses and severe pain from the Hand Foot Syndrome. Brittany had to discontinue wearing her fashionable high heeled shoes and boots, but has been happily gradually able to return to wearing some of her higher heels occasionally. Putting deeply moisturizing cream on her feet and hands and wearing socks and gloves over the cream at night seemed to help somewhat, and just avoiding being on her feet and using her hands as much as possible. Professional pedicures and manicures were not possible as they were much too painful for her very sensitive hands and feet. I Hope that you are continuing to be able to stay well hydrated to prevent the dehydration caused severe headaches and vomiting that can be a result of TKI associated severe diahrrea. My most caring thoughts and very best wishes for treatment success continue to be with you dear Nhi, and I will be anxiously awaiting the results of your monitoring scans in two weeks which will Hopefully show stable disease and tumor shrinkage.
With warm and gentle hugs, special caring, healing wishes, and continued Hope,
Bonni

[ntran727]

Hi Debbie and Bonni,

Thank you for your responses as usual =)

Debbie - the neutrophil count has been up and down but never significantly low. The week before they were normal and this week they were more on the low side so my oncologist is not worried about it. I also feel well and has been thankfully escaping the flu and everything else that has been going around despite working my usual 40-50 hours at the urgent care. The plan is to repeat labs in 2 weeks (we were doing them weekly for about 4 weeks) unless I have any symptoms of course.

Bonni - thankfully I don't have any problems with my hands and my mouth is sensitive but not to the point of not being able to tolerate spicy foods. I usually eat VERY spicy foods and haven't been able to do that but I can eat mostly everything else. Toothpaste is okay too. Diarrhea, nausea and vomiting as well as other GI symptoms has never been an issue for me and I hope it stays that way. Yes, I still carry around a 40oz hydroflask with me at all times and drink at least 80oz of water a day on top of other fluids like coconut water. My stylish boots and heels will have to be stored away for now, but I don't own many high heels anyway since I could never walk in them lol. What kind of creams did Brittany use for the hand and foot syndrome and did they have to adjust her dosage or did it just go away over time?

[Bonni Hess]

Dear Nhi,
Thank you for the additional shared information. Regarding your question about what type of cream Brittany used for her feet and then covered with socks in bed at night to try to moisturize and soften the very thick and painful Hand and Foot Disease callouses , she used vaseline. Other than reducing her initial high dose Cediranib dosage from 45 mg. per day to 30 mg. per day about two months after she started the Cediranib Clinical Trial in 2009, Brittany's Cediranib dosage has not been reduced during the past seven and a half years of her Cediranib treatment. With great courage, perseverance, and determination she has suffered through and endured the harsh and debilitating side effects of the drug, and it has just been within the past year that she has inexplicably experienced a reduction in the severity of the side effects. Because Brittany is a pioneer in the long term use of Cediranib, we don't know if her side effects are lessening due to her body having adjusted to the drug, or if her body is developing a resistance to the drug which will heartbreakingly ultimately result in disease progression. At this point, only with time and continued vigilant monitoring of the disease through regular complete scans, and with a pro-active awareness of any concerning symptoms, will we be able to try to determine an answer to these questions.
I am so grateful that you have thus far not experienced any of the severe mouth sensitivity problems or gastrointestinal issues commonly associated with TKI use, and I share your Hope that it remains that way. Perhaps your alternating dose of the Sutent is preventing the severe side effects. As with everything with this unpredictable disease, only time will tell.
Stay warm and safe in the very cold and wintry weather gripping most of the country, and keep in touch as you are able.
With more warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[ntran727]

Because Brittany is a pioneer in the long term use of Cediranib, we don't know if her side effects are lessening due to her body having adjusted to the drug, or if her body is developing a resistance to the drug which will heartbreakingly ultimately result in disease progression.

Bonni, it is interesting that you say this and sadly we will only be able to tell with time. Brittany sounds like one tough cookie for all that she has endured. If the drug works, I too will have to endure whatever side effects come as long as it is manageable. If the scans come back with progression of disease, it will be hard to say if the drug didn't work or if I just took too low of a dose. I guess we will have to wait and find out. I will try vaseline too if the urea cream doesn't work. Thank you for your input!

[D.ap]

Nhi

can't wait to get the scans to see if it is working at all. Going to stay optimistic

Please let us know either way!
Love your positive ways.

We will be performing MRI, and 2 CTs around the same time.
I'm holding to the same optimism

[Bonni Hess]

Hello once more dear Nih. I am holding VERY tight to Hope that your upcoming scans will show disease stability and shrinkage/disappearance of your lung mets. However, if the scans unfortunately do show disease progression, would you have the option of remaining on the drug with an increased dosage to try to determine if a higher dosage would be more effective?
Brittany truly is a "tough cookie", as are you and all of the ASPS Community patients who so courageously fight this very challenging disease. I am deeply humbled by the incredible grace, strength, courage, and invincible positive attitudes with which you all face the many challenges and endure the pain and the suffering created by ASPS. My greatest wish and Hope is that a permanent ASPS treatment and cure will be found sometime VERY soon, and it is that treatment and cure that I will continue to aggressively and relentlessly search for through research, networking, and shared information with ASPS Community members throughout the World.
Heart to heart with deepest caring, positive thoughts, healing wishes, and continued Hope,
Bonni

[ntran727]

Hi everyone,

quick update since I have been busy and not been online.

I was taking 25mg/25mg/37.5mg of sutent with the hopes that my gum pain/feet pain would get better. Compared to the every other day 25mg/37.5mg, the symptoms definitely are less, but still there. I had a close call with gum inflammation which almost turned into an infection, but I was able to prevent it with frequent brushing, salt rinses and listerine rinses and modifying my diet.

I checked my labs on 2/12/17 because I was feeling more fatigued than usual and was experiencing pretty severe stomach aches/upper abdominal pain a few hours after taking the medication. Labs were normal except for my thyroid. TSH was 17.08 (normal 0.36-4.42) which is very elevated meaning I have now developed hypothyroidism. Last time TSH levels were checked was in December and was normal at that time. Aside from the very dry skin and feeling cold all the time, I didn't have other symptoms of hypothyroidism. The fatigue was not very pronounced.

I started on levothyroxine 25mcg (lowest dose) and have been on it for the past 4 days. I am getting a jittery feeling with occasional palpitations but other than that it seems to be fine. I lowered the dose of Sutent to 25mg daily now and side effects are very minimal/pretty much none. My feet and gums are better. Even the stomach pains went away. I will likely increase it again when I feel like I've had a good enough break. I will be traveling to Australia for 2 weeks on a honeymoon soon so maybe will stay on the lower dose just in case something happens overseas.

My next scans are due for end of March - just the CT chest this time. I will keep you all posted.

[D.ap]

Good morning Nhi.

Its good to hear that you are able to manage the side effects of sutent.

How's your BP /HR doing?
Bp crept up last of January, right?

Safe travels to Australia and look forward to an update and reports of you trip!

Much love
Debbie and family