Started Sutent!

[NS8000]

After 1 month of waiting, 11 vials of blood and 1 CT scan, I have been fully registered in the Sutent trail! Yesterday was day 1 of 4 cycles for myself with 28 days on and 14 days off. I've been told to expect some side effects, but they wont show up for at least 2 weeks. The 2 most expected side effects seem to be just fatigue and having a hyper sensitive tongue. Although they have found that after 2-3 cycles the side effects completely subside, so only time will tell what happens to me. Well I'll give regular updates with what this pill does to me, it should be interested for a lot of people on this forum that have run into chemotherapy 'problems'.

[fuse929]

I wish you the best of luck man.

[dannysbrother]

thinking about you...

you have been through so much. i have faith that this clinical trail has the potential to achieve the success you have been fighting for.

danny was very close to beginning a Sutent study before he began his current regiment, a study of flavopuridol.

please keep us updated. and check your messages.

-michael

[dadmo]

Niki:
Good luck with the Sutent trial. Let's hope you recovery from this is quick so you can get back to your personnel quest of conquering 7 summits.

[Fed]

This is great. Make sure you document everything that happens during the trial. Sometimes the minutiae make a difference in all of this. Best of luck!

[dadmo]

Niki:
One of my goals is to climb Mt. Rainier. Perhaps some day you can help me do that.

[jennys]

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

[dadmo]

Oh Jen I'm so sorry. If you can think of anything we might be able to do please let us know.

[Lori]

Jen, I wish I could do or say more than simply, I'm thinking of you and your family. I'm so sorry.

Lori

[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

[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

[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

[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?

[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

[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.