Started Sutent!

[DAWN82]

nice!!

congrats on the good progress so far!

can someone tell me what sutant is? is it a new experimental drug?
it sounds like it works great!

Best to all-
Dawn

[dannysbrother]

Niki,

YES!!!

I am ecstatic to hear about this news! Just fantastic.

Beat the hell out of it, man! I believe in this treatment.

-Michael

[Scott]

I'm thrilled to hear you're getting good results, and climbing mountains to boot! I hope we'll get to hear all about your trip.

[Fed]

This is fantastic! I'm sure you have been documenting everything that has been going on; it will come in handy to everyone studying the effects of kinase inhibitors on cancer.

Your efforts with the trial have great impact, and they validate over and over the importance of research into this area. Without people like you, our work would have no purpose.

Niki, thank you for what you are doing.

[Karen]

WOW!!!! What good news!! How do you feel? Any other side effects besides the gluten sensitivity and sunlight sensitivity? How is the HCG?

You may not be a pioneer to climb those mountains, but you are a pioneer on this climb and we are watching you and will cheer you at the summit!!!!!

[NS8000]

Well one full cycle down of sutent and i've now got the major results from the CT scan. At the beginning of the week the doctors believed that most of the tumors were shrinking but there was more spreading in the lungs. However upon further investigation into what is happening, it turns out the best thing that could happen in fact did. The tumors are in fact bleeding and dying, which is a very good sign. I am in my two week break right now before i go for another 28 days on sutent and this is when we will see the major effects going to work as it has fully built up in my system.

On the side, I am in fact going on a climb to Mt. Elbrus and Mt. Kilimanjaro back to back starting on the 28th, so I am super excited for it! We will then find out what high altitude does to the lungs on sutent which should be very interesting for all the clinical research people following me.

[Karen]

Niki,
Sounds like a fantastic trip! I want to see a pic of you on your climbs. I have a fear-of-heights thing so must live vicariously through you on this! Fingers crossed for your CT this Friday...please keep us posted.

[dannysbrother]

Niki,

You are an inspiration! Kilimanjaro!! wow.

I've been thinking about you and hoping you were having success in this study. Still sounds like there could be potential and great promise... The CT scans will certainly show the progress. It's very easy to get hung up on your HGC level. It is generally a good indicator, but it only tells part of the story. Danny's HCG has dropped at first and then slowly has risen throughout Flavopuridol, yet the great majority of tumors have shrunk substantially throughout the study when looked at with a CT scan.

Wishing you well and thinking good things,
Michael

[NS8000]

Well another 2 weeks down in the study, and my first cycle is coming to a close. Unfortunately my bHCG is up again at 2300 (which is still very low considering I have not had active treatment in over 11 weeks. And the final verdict on this first cycle will occur on friday when I have a full CT scan again (13th of the year!).

As for myself at high altitude, I will be finding out very soon! On July 28th I leave for Mt. Elbrus in Russia and Mt. Kilimanjaro in Tanzania getting back August 21st. Prior to this I got the full go ahead from my three doctors as well as my clinical research specialists who have some of the most interaction with Sutent. I've got a whole lot of people very curious to see what the high altitude will do to me, as i'm one of the only people ever to try these sorts of things with highly monitored active cancer. One way or another, this trip is going to be a whole lot of fun!

[Fed]

This sounds like decent progress. The oddity of all the symptoms is to be expected considering the experimental status of Sutent. I will definitely stay tuned looking forward to reading more about your pioneering efforts.

[mstlyn]

Well, just thought i'd give a small update after 2 weeks on sutent. So far there are are a few side effects i'm noticing so far. One is that I am now gluten sensitive (no more pasta) which gives me massive abdominal pains and secondly my kidneys always hurt in the evening especially when laying down, and lastly I am sun sensitive now (3 weeks ago i spent all day outside climbing in 30c weather and a ton of sun and not even the slightest burn, now 1 hour outside in direct sun and i'm burnt).

Although these are bad side effects, sutent is actually working for me. So far my bHCG levels have fully stabilized and started to decrease over the last month, which has never happened for me. My markers would always be on the rise, so this is a very good sign so far. In 4 more weeks i go for a CT scan to determine the effect on the tumors in my lungs.

Oh, and I found out i'm the 4th person on the trial thus far for Germ Cell, and that i'm about 15 years younger than the next person on a full 50mg / daily dose of sutent daily.

I hope this little bit of info helps everyone with their questions on sutent and the fun that it is to take it!

Niki

This is very good news so far. Im praying for full response for you .. we will be watching for more updates.

Hugs,
Tammy

[dadmo]

It sounds like things are moving along fairly well. Those side effects might be tough to deal with but the results are certainly worth it. Do you have any idea yet how this will affect your lung capacity at altitude?

[NS8000]

Well, just thought i'd give a small update after 2 weeks on sutent. So far there are are a few side effects i'm noticing so far. One is that I am now gluten sensitive (no more pasta) which gives me massive abdominal pains and secondly my kidneys always hurt in the evening especially when laying down, and lastly I am sun sensitive now (3 weeks ago i spent all day outside climbing in 30c weather and a ton of sun and not even the slightest burn, now 1 hour outside in direct sun and i'm burnt).

Although these are bad side effects, sutent is actually working for me. So far my bHCG levels have fully stabilized and started to decrease over the last month, which has never happened for me. My markers would always be on the rise, so this is a very good sign so far. In 4 more weeks i go for a CT scan to determine the effect on the tumors in my lungs.

Oh, and I found out i'm the 4th person on the trial thus far for Germ Cell, and that i'm about 15 years younger than the next person on a full 50mg / daily dose of sutent daily.

I hope this little bit of info helps everyone with their questions on sutent and the fun that it is to take it!

Niki

[Margaret]

Jen, I am so sorry. I was really hoping that the trial Danny is on would be an option. Is there anything we can do to help you?

Prayers for you my friend,

M

[mstlyn]

Glad to hear you have started the trial, wishing you all the best and hearing more from you.......

Michael, I spoke to Dr Schwartz and unfortunately he said my brother was not a candidate for the trial that your brother is on....thanx for the information to be able to contact him tho as it helps to follow all leads....

Dr Einhorn has been in touch with my brother's Dr and has confirmed that Gerrards tc is incurable.....he did mention treatment options, but Gerrards Dr says that they have tried those combinations thruout his chemo and they have had little affect....

Thankyou all for your support thruout all of this, Gerrard, my family and I have truly appreciated it....

Jen

Jenny, I just did a search to find your more recent posts and I am very sorry about the message from the doctors.

I keep trying to find words, but there are none. My prayers are still with Gerrard, you, and all loved ones involved.

I hate being so helpless!

Everyone is here for you and Gerrard; and I am just so so sorry.


Tammy & Anthony