Once Cycle Down, God-Knows-How-Many-More To Go!

Hey warriors,

ErinGate here to give an update.

When I last posted, my mom (who had been dx with Stage IV RCC with mets to lymphs and lungs on 4-11-08) had just started her first cycle of Sutent.  Well, she is wrapping up her first cycle of Sutent and about to start her 14-day break.

There have been lots of ups and downs and I have to say, the sides have been minimal.  This cycle she has suffered from: fatigue, weakness, nausea, vomiting, swelling and most recently, a painful hemorrhoid with impacted fecal (it is unknown if this is from RCC/Sutent)

Through these past four weeks, I have found this site/mb to be helpful both for information and for emotional support.  I'd like to give a special thanks (and virtual hug) to julieuk who has responded to my posts and has helped make me stronger.

My mom is scheduled for her CT scan after she has completed her second cycle and I hope to have good news for all of you!

How are the rest of you getting along on Sutent?? I'd like to hear (or read) updates on how everyone is doing.

ErinGate

Hi ErinGate,

Thanks for the update on your Mom.  It sounds as though she's doing fairly well even with some unpleasant side effects from the Sutent.  Please let us know how the CT scan comes out.

My husband, Dave, has finished 6 doses of Torisel and is due for his CT scan tomorrow (Monday, 8/25/08).  Needless to say, we're pretty nervous and are hoping the scan shows significant improvement.  We think the scan will show good progress because Dave hasn't had a cough since the first week of Torisel, and prior to that he was coughing so badly that he couldn't even sleep lying down, no matter what positioin he was in.  We think the Torisel has at least shrunk the lung and lymph node tumors.  It's very scary.  Please keep us in your prayers, as we will also be praying for you and your Mom.

And you're so right about this forum.  People here are great.  JulieUK is one of the best.  She's always trying to help others get through this even though her own husband is quite ill.  What an unselfish person she is.  Everyone on this forum has been so supportive and helpful, and that in itself is an answer to prayer...to be able to find others who know what we are going through. 

God Bless you All,

Nancy

Hi,

DX RCC June 1, 2008 (2 days after my son's wedding).

First round Sutent complete August 2, 2008.

Sideeffects: Mouth sores, fatique

Treatment at Cancer treatment Center of America Philadelphia.

Naturopath at CTCA has been a big help.  9 days into 2nd round and feeling pretty good.  Have to since work has me scheduled for 76 hours this week.

 Will keep up dating as to hw 2nd round goes.

I'll keep you

 

I know exactly how some of you are feeling, as I've been a caregiver for my husband over two years now....we have been through many valleys and hills along this journey and I've decided to start my own blog to relate our experiences with regards to various chemo drugs he has taken, his side effects and how he's feeling now.

If you'd like to check it out, go to the following link:

 www.myhusbandskidneycancer.com

I look forward to your comments.

Good luck to all!  Debbie

 

It sounds like you're first cycle wasn't that bad(?)

If I may ask, what is "Naturapath"? Is this something that's only available at CTCA?

Please keep me posted as to how you're feeling during your cycles.

All the best,

ErinGate

ErinGate - my wife went on Sutent on 02-29-08, 50 mg/day for 28 days, 14 day holiday.  After 2 cycles, mets on one lung were gone, on other & on kidney they shrank @ 1/3d.  B/c of side effects, dosage was reduced to 37.5 mg/day, & the SEs have decreased. After 2 cycles, CT showed no progression. I am glad you found this board & hope it will be as helpful to you as it is to me.  Almost as helpful as prayer, but not quite.

how does one afford sutant?

 

On 8/25/2008 ErinGate wrote:

It sounds like you're first cycle wasn't that bad(?)

If I may ask, what is "Naturapath"? Is this something that's only available at CTCA?

Please keep me posted as to how you're feeling during your cycles.

All the best,

ErinGate

Hi ErinGate

A naturopath or naturopathic is someone who specializes in naturopathic medicine (treat w/ food and herbs/vitamins).  They have them on staff at CTCA but I'm not sure how many other hospitals have them on staff as I was also treated at CTCA but in the Zion IL facility.  CTCA treats the whole body with nutrition, mind-body, naturopathic meds, acupuncture, exercise, and spiritual. 

Diana

 

On 8/30/2008 Dlynn1210 wrote:

 

On 8/25/2008 ErinGate wrote:

It sounds like you're first cycle wasn't that bad(?)

If I may ask, what is "Naturapath"? Is this something that's only available at CTCA?

Please keep me posted as to how you're feeling during your cycles.

All the best,

ErinGate

Hi ErinGate

A naturopath or naturopathic is someone who specializes in naturopathic medicine (treat w/ food and herbs/vitamins).  They have them on staff at CTCA but I'm not sure how many other hospitals have them on staff as I was also treated at CTCA but in the Zion IL facility.  CTCA treats the whole body with nutrition, mind-body, naturopathic meds, acupuncture, exercise, and spiritual. 

Diana

I guess I should have mentioned all of the above is in conjunction with conventional treatments and immunotherapy.

Diana

 

Hi ErinGates - my husband started cycle 18 this morning.  Doing well.  He has been on sutent continuously with no break since cycle 11 (5 months).  The s/e are not too bad mostly stomach issues.  They are all controlled by meds.  Tell you mother to hang in surtent is doing good for many patients.  Short history:  Kidney out Dec 1998 and NED till June 2002 then on interferon (Intron A) for 3 1/2 years, then nothing for 9 months, then nexavar for 4 months and now sutent for 18 cycles.  Not bad for someone they told in June 2002 that he had 6 to 9 months to live.  Keep the faith and hang in.  Mary aka Mazzy