Nhi from NY - Dx June 2016

[Bonni Hess]

Dear Nhi,
Thank you for your thoughtful update. It sounds like you are continuing to pro-actively move forward with evaluating all of your treatment options and plans to begin a systemic treatment with Sutent following the freezing of your embryos. When we had explored harvesting, fertilizing, and freezing Brittany's eggs prior to her beginning her Cediranib Clinical Trial, we were concerned about her needing to take hormones to stimulate the release of her eggs for fertilization since there is some data that indicates that hormones can possibly increase disease progression. However, the time element involved in Brittany needing to immediately begin the Cediranib Trial and the 6 weeks estimated time required for the eggs to be harvested and fertilized heartbreakingly prevented her from being able to have this done, so we don't know if the hormones would have caused increased disease progression for her or not. Was this discussed with you as a possible risk of the hormone induced egg harvesting? I Hope that the procedure goes very well for you with a very successful outcome in terms of the egg retrieval, fertilization, and freezing and no hormone related disease progression. I Hope too that you will have a very successful response to the Sutent and then eventually be able to move forward with your Hopes and plans to have children sometime in the future. Thank you for the important shared information about the Livestrong Fertility Rescue Program which is certainly very helpful for our ASPS Community female patients who may want to preserve their ability to have children but find the expense of the procedure cost prohibitive. Once you begin your Sutent treatment, perhaps you can post your updates regarding your Sutent experience, side effects, and results in the Sutent topic so that it can be more easily followed by those who are considering Sutent treatment. In the meantime, take care, know that my most positive thoughts and very best wishes are with you, and keep in touch with this Board as you are able.
With special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[ntran727]

Thank you Bonni for your post. Yes I was worried about the hormonal effects as well but at this point we were will to take the risk. My oncologist cannot comment on this as there is no sure answer because every patient responds differently. The whole egg freezing process can actually be done in 2 weeks time. Mine is taking 3 weeks because of a 9 day trip I took to Thailand, so it is actually very quick hence why my oncologist agreed to it. He plans to scan me after I am done with the egg harvesting so we will know if the hormones had any effects on tumor growth. It will be useful to know. I will start posting my experiences on Sutent on the TKI page so it can be easily followed. Although Brittany did not get to freeze her eggs, she is still young and you cannot lose hope that she can some day still have children. The more important thing is that she is doing very well on cediranib which is a great inspiration to us all.

[Bonni Hess]

Dear Nhi,
Thank you for your very nice response and kind and encouraging words about the potential for Brittany to someday be able to have children which has been her greatest Lifelong dream, and a Hope which she and we continue to hold very tight to. I am grateful that your egg harvesting and freezing procedure was able to be done so quickly, and I am very Hopeful that the hormones did not cause any tumor growth or disease progression. If there is unfortunately any tumor growth, it will probably be difficult/impossible to determine if it was caused by the hormones, or if it is attributable to the normal progressive nature of this insidious disease, but any information that you can share regarding your post egg harvesting scans will be deeply appreciated and very helpful in trying to establish an anecdotal data base regarding this important issue. I will be anxiously awaiting that information, as well as your posts on your Sutent experience and results, as I continue to hold you very close in my heart and my most caring thoughts.
Reaching out heart to heart to share my deepest caring, most positive thoughts, healing wishes, love, and continued Hope,
Bonni

[ntran727]

Hello all. I just wanted to post some updates.

I had my egg retrieval 2 days ago and they got 32 eggs! I guess I had "over-achieving ovaries" as my fertility doctor called it. There were about 25 mature eggs and approximately 20 were fertilized. They are waiting 5 days to see which ones make it before the freezing of the embryo. I should have plenty to store because most patients will have around 8 or less.

I went for a repeat CT chest w/o contrast yesterday and here are the results:
FINDINGS: several (approximately 15) lung nodules are again identified, some stable and some slightly increased in size. The nodules that are increased in size are generally 1mm larger in each axial dimension. The largest nodules are an 8x7mm RML subpleural nodule, previously 7x6mm, and an 8x5mm LLL nodule, previously 7x6mm. THe largest interval increase is in the RLL nodule measuring 5x5mm, previously 3x3mm. The rest of the scan was normal.

I was able to look over the scan with my radiologist, which was nice. I guess I am happy that there are no new nodules and it seems that the nodules are growing steadily as predicted. The rate of growth seems to be about 1mm per month give or take based on my previous scans from June -> October. I don't think that the hormones sped anything up, so that's good news as well.

I started the Sutent this morning and getting very emotional as it becomes more real that I am going to have to be on treatment for this horrible disease. I wanted to stall as long as I can to hang on to the previously very healthy me. I started going to the gym again so I can have more energy - anticipating that the drug may make me more fatigued. I can post updates on the other forum under the TKIs regarding my experience with Sutent if Olga can help open a thread for me there, I am not sure how it works.

-Nhi

[D.ap]

Nhi

Wonderful news on the fertility experience ! Sharing in your joy
You are correcto in the rate of growth At least for some patients
Josh was very much on that growth rate since 2012

By going to the systemic topic, then go to TKIs and click on subforum sutent. At bottom , you can create"new topic". A topic with your choice of wording

I will be looking forward to your updates.

Hugs
Debbie

[Bonni Hess]

Dear Nhi,
so deeply share your great joy and Hope following the very successful retrieval and fertilization of a large number of your eggs . My very best wishes are with you for being able to eventually fulfil your dream of becoming a mommy once you are able to attain long term and sustained stabilization of your disease which will Hopefully occur with your Sutent treatment.
I am sorry, but unfortunately not surprised, that your chest CT showed slight but steady increased growth in some of your lung mets, but I am very grateful that the hormones taken for your egg retrieval procedure did not seem to accelerate the speed of the growth of the lung mets or cause additional disease progression.Will you be having any additional scans such as abdominal/pelvic to monitor your disease, or will you only be followed with chest CT scans?
I am holding very tight to Hope that you will have a very successful response to the Sutent with minimal negative side effects. I will be anxiously awaiting your updates in the Sutent topic regarding your Sutent experience and results when your time allows.
In the meantime, I Hope that you will be able to enjoy a beautiful, relaxing, and abundantly blessed Thanksgiving shared together with family and friends, and brightened with Hope as you begin your Sutent treatment on your journey to healing.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[ntran727]

Thank you Debbie and Bonni for your response. I will start a new topic in the Sutent section to post updates.

Bonni, I plan to ask my oncologist to order a CT abdomen during my next scheduled CT chest scan which should be around 4-6 weeks after being on Sutent. That's approximately 6 months from my previous CT abd/pelvis. I did have an MRI pelvis in October which was clear (we did this to monitor my primary site in the right gluteus). I plan to ask him for an annual MRI brain and bone scan on top of the CT abd/pelvis every 6 months. That seems to be the normal scan schedule that I've read on here which makes sense to me. The CT chest will be more often of course as we are monitoring my progress. I am trying to stay positive and pray that the sutent will work on me but aware that there will be many challenges ahead. I am feeling great as I have gone back to the gym - trying to prepare to improve my fatigue level as a potential side effect of the medication.

My mom will be visiting for Thanksgiving, so I am excited about that. My family is in California, but husband and in laws are in New York =)

I hope you are all enjoying the pre-holiday! Time for black Friday shopping

[ntran727]

Hi all,

Just wanted everyone to know I started a new thread for Sutent here in case you wanted to follow:

http://www.cureasps.org/forum/viewtopic.php?f=52&t=1293

Happy Thanksgiving!

[D.ap]

Hello and good Sunday morning Nhi

I was going to post this link from the forum on your sutent post however I felt it better presented here on your personal so as to not clutter your time line while you are on sutent
Fictional along with Olga, Bonni and a lot of host members have been blazing the frontier with info , experiences with and to their love ones LONG before Josh and I and family entered the ASPS picture in 2012

It's an excellent point medically on looking at ASPS on a celleur bases ( molecular profiles) to begin understand how to kill it systemically.
I'm positive you've performed a lot of this research however information is the key , huh.

http://www.cureasps.org/forum/viewtopic ... t=271#p658

Fictional and husband are medical doctors and their daughter K, was 10 years old when dx'd in 2007
So 19 this year
They've not been active 2013 however along with Olga and Bonni and all have helped us as patience to be where we are today .

http://www.cureasps.org/forum/viewtopic.php?f=4&t=269

[ntran727]

Thanks for the links, Debbie. I have read "K's" story... and probably most of the stories on this forum LOL.. and it's always good to see the different responses to treatments and what others have tried. The molecular profiling is interesting, indeed. My oncologist did not think that it would help since he has done it in the past and it didn't seem to correlate with the responses to treatments. Of course, more data/research is required over time to see if it would help in the future. I would like to have it performed, but don't want to be so pushy about it. I am trying to be a good patient and not so much the "doctor" type of patient (it's very difficult to do). I am a Family Medicine Doctor, not an oncologist so I have to put my trust/faith in him. Of course this does not mean not being proactive and staying on top of it. It is my body after all. If I cannot tolerate the medication, I will definitely look into surgery as the next step to remove the lung tumors especially if they continue to grow or if more appear before they get too big. I already have 2 8mm nodules that are getting close to the 1cm mark. Toughest part is waiting .... I am very impatient, so I will have to work on that

[Bonni Hess]

I am correcting/clarifying Debbie's reference to 'F''s daughter 'K' as now being 19 since devastatingly 'K' tragically lost her very courageous 7 year ASPS battle in 2014 at age 17. With special caring thoughts and continued Hope, Bonni

[ntran727]

Oh no =( I was wondering how "K" was doing. That is very sad to hear that she lost her battle. It is so scary to see how many patients have been lost to this dreadful disease no matter how proactive they are. We have no choice but to keep trying and hope for the best.

[Bonni Hess]

Dear Nhi,
I am so sorry to have had to post this heartbreaking news, but loss is tragically a harsh reality with this damn disease. Unfortunately, 'F' discontinued her participation on this Forum about a year before dear 'K' lost her courageous battle, so I am unsure about what treatment 'K' was on or what the situation was with her disease at the time of her passing. As you said, for those of us who are continuing to fight it, "we have no choice but to keep trying and hope for the best." However, unfortunately just "hoping for the best" is not adequate and it is critically important to remain very proactive, to not become complacent, to not naiively listen to what the doctors tell us, recommend, or advocate for treatment, to seek second, third, and even fourth opinions, to be as knowledgeable as possible, and to actively research, network, and participate on this Forum reading and sharing anecdotal information so that we can all learn from each other. Obviously, as evidenced by dear 'K''s and other patients' tragic losses, doing all of this doesn't always win the battle, but it at least gives us some weapons to try to fight it. Stay strong, hold tight to Hope, and know that you are not alone in this difficult battle dear Nhi.
With special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[ntran727]

Hi everyone,

I thought I would post my scan update here. Please refer to the Sutent forum to read about my experience on Sutent thus far.

I had a CT chest/abd/pelvis with and without oral and IV contrast on Wednesday, 1/25/17 and f/u visit with my oncologist yesterday. Just to recap, I have not had a CT abd/pelvis since June 2016 (initial diagnosis), so I was really worried something would show up there. The previous CT chest I had was in November showing the same 15 nodules with about 5 of them that they measured that seemed to be increasing in size before I started on Sutent. Here are the results:

CT Chest w/contrast:
5x4mm RML nodule, previously 8x7mm
3x2mm RUL nodule, previously 6x4mm
3x2mm LLL nodule, previously 7x5mm
3x2mm LLL nodule, previously 4x3mm
3x2mm RML nodule, previous 3x3mm
4x3mm RLL nodule, previously 5x5mm
There were about 9 other nodules measuring between 1-4mm, stable from previous. No new lesions are seen in the lungs.

CT abdomen/pelvs w/IV and oral contrast: NO EVIDENCE of metastatic disease!!

These are results from 8 weeks of being on the medication, 2 weeks at the full dose of 37.5mg, 2 weeks with 25mg dose due to liver toxicity, 2 weeks of 37.5mg alternating with 25mg every other day, then I had another incident of gum infection requiring Antibiotics for a week so I had to skip a day and took the lower dose of 25mg for 5 days then resumed the every other day dosing again.

At this point, it seems that I cannot tolerate the regular dose of 37.5mg because it creates too much toxicity, so my oncologist said that I can adjust the dose accordingly based on my symptoms. The hand and foot syndrome (or rather foot syndrome because my hands are fine) seem to get a lot worse when I take the every other day dose and gets better immediately when I take the lower dose. Same goes for my gum/tongue sensitivity and other skin manifestations like acne and random rashes. I am grateful that I have not had any fatigue, nausea, vomiting or diarrhea with it. I am going to try to take 25mg/25mg/37.5mg dosing to see if it will help with the side effects and then adjust it as needed.

I started yoga which is so helpful to relax and get in shape. Still keeping my full weight (actually gained a few lbs) and drinking lots of water.

I am so happy that I am responding to this medication and hopefully will continue to.

[Olga]

Nhi,
thank you for the detailed update with the scan report. I am very happy to hear about the good response and hope for it to continue. Your experiment with the dosage is interesting. As you know, the MTD (maximum tolerated dose) is established in the Phase 1 trials. I am not sure if there is much effort done to find out if the lower dose is the same effective as the MTD or may be even better. Historically it was assumed the bigger dose has better chance but with the targeted therapy drugs it is hard to say as its effect is so different for different people due to differences how the bodies process the drugs. It is interesting to hear that you do not get the most known TKI effects (fatigue, nausea, vomiting or diarrhea). Have your had your thyroid function checked? It is often said that the response to TKI and some decline in thyroid function go along as the parts of the same process but it does not seem the case with you?