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The war rages on, but a battle is won (Good news)

vdm13
Posts: 35
Joined: Jul 2012

Hello, friends. Today I had my first CT scan since starting on Sutent (2 cycles). (Background - 42yo male, Stage 4/Grade 4 mRCC to lungs, thoracic spine, rt kidney. Radical neph on left kidney/adrenal 5/25/12). Here's the update, and quotes are lifted directly from the scan report. "Significant improvement" of the lung mets, and "many lesions are no longer seen". Nodules in the rt lower and central left lobes are "no longer seen". Remaining nodule is reduced by approx 60%. The mass along the spine shows "significant improvement" with a reduction in size from 1.9x1.9cm to 1x0.7cm. Rt adrenal gland mass decreased from 4.9x2.8cm to 2.3x1.3cm. And my favorite one, regarding my remaining rt kidney: "The right renal masses are no longer seen."

Plan is to continue on Sutent. Next Scan in 10 weeks. Many thanks to the wonderful people on this board, to Gerry Wright (MAARS!). Keep your chin up. Fight the good fight. I want everyone to share in my win here, and keep the positive energy flowing as we all wage our war. We can win!!!

All the best,
Vin

icemantoo's picture
icemantoo
Posts: 1468
Joined: Jan 2010

Vin,

The way you are going you are going to put Stage IV RCC out of business. Keep up the good work.

Icemantoo

tacyarts
Posts: 73
Joined: Apr 2012

That is excellent news, wow I am so happy and encouraged with your report. I am currently taking sutent and a combination mdx 1106 combo trial and have yet to have any scans yet. Your fantastic news justs lifts the spirits with hope. I am very happy for you!!

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

on the good news!

angec's picture
angec
Posts: 621
Joined: Mar 2012

Vin that is awesome!! Can you tell me what has been your experience with sutent as far as dose and side affects? Your post made me smile please continue on that road to NED!

vdm13
Posts: 35
Joined: Jul 2012

Happy to share. I'm on 50mg Sutent, 4 weeks on, 2 weeks off. I just completed my second cycle yesterday. All in all, with the results I just witnessed I'll take the side effects. First and most prominent is fatigue, but only a 1 on a 1 to 4 scale. Second (this round) was taste changes. Imagine your favorite hero sandwich, dipped in luke warm water before you eat it. That's the sensation. Watery taste to everything. I was spared any skin conditions, although I had "hot feet" and some sensitivity. I've been using Bag Balm daily in the mornings and evenings. Stomach upset was there, but usually subsided with eating. No color change or loss to my hair yet, and I hope that keeps going. I have noticed some whitening of my eyebrows and lashes, but at 42, that could be aging and it just looks like its catching up to the rest of my head. Finally, my bowel movements have been less than stellar, but I wouldn't say it was ever inconvenient. So far, so good, and worth it. Thank you all for your kind words!

angec's picture
angec
Posts: 621
Joined: Mar 2012

Thank you for sharing. That is not too bad, especially for 5o mgs. I hear others say their hair went white on it. Do they say how long you stay on it? Have you lost any weight? My mom might start it in Novembet but she is 80. Keep up the good work! So happy for you!

vdm13
Posts: 35
Joined: Jul 2012

The plan is for me to stay on as long as it is working, and if it stops to move to the next targeted therapy, with a goal of living long enough for them to find the cure. Typical efficacy for Sutent is around 12 months, I've heard. I don't want to sound arrogant here, but I plan on beating the beast before then! All the best to your Mom. I hope she does as well as I have so far!

angec's picture
angec
Posts: 621
Joined: Mar 2012

Thank you very much. From your words I can tell cancer picked the wrong one! We are there fighting too! Enjoy the day! How are you FOX?

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

I am doing REAL good. Thanks angec. Since my last infusion, zometa dose and start of radiation, ALL my pain is gone! I'll get my obligatory scan next week and results the first week of Oct. Every scan seems so important.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Fantastic news Fox! All of this good news has me glowing! How is the Zometa? Any side affects from that? So happy for you!! Waiting for more good news next week or so!

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

Honestly, If I have any side effects at all, they aren't noticeable. Although my radiation oncologist tells me the radiation fatigue is gonna hit me "Big time." We will see. I have told him, like I tell every care provider, "I tolerate these things real well." Most just go, "Uh huh."

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

Hey Fox - I had a few mets on my ribs but since they were able to aim the radiation so that it went in and out of the edges of my body (not hitting any organs) they were able to give me large doses for only a week and with NO side effects. Taking Zometa now every 3mo since I've been taking it for over a year.

It's been over a year now and I'm amazed how the bone pain is completely gone and the mets aren't even discussed anymore. Radiation seems to be really effective with RCC on bone mets. However I asked if there would be repair of the area and eventually it would go away, but the ans was no.

Question for you: As a newbie I was wondering if there is some way I can get notified (ex. auto email) when someone responds to my posting, or if I have to constantly remember where my postings are (like this one) and find it again to see if someone responded. Some discussion groups have notification and those are great. Thanks guy.

cdjr
Posts: 10
Joined: Apr 2013

Hi

 

I am writing from the UK -  my older brother was diagnosed with kidney cancer in September 2010 aged 55.  He was told it was contained and that no treatment should be necessary once his kidney was removed.  On that basis his surgery was delayed twice and he was not operated on until January 2011. We will never know if that delay was significant and there is no point in looking back, only forward, but by the time his kidney was removed it was obvious it had not been contained albeit scans immediately after showed no signs of the cancer having spread.  His surgeon was clearly so concerned at the size and aggression of the tumour that she referred him to a specialist consultant in one of the best hospitals in London.  He was put on a clinical trial for sutent (we think he had the placebo as when they scanned him in October 2011 several nodules had appeared on both lungs, it was not looking good at that stage).

As my brother was on a clinical trial he was then automatically switched over to the sutent in November 2011, at the three month scan all of the nodules had reduced significantly, these reductions continued at each scan.  He was on a very high dose and suffered quite severe side effects in weeks three and four of the cycle.  However, he still did all the normal things and continued going to the gym (every morning!) and to work.  He remained very positive and led life to the full.  However, his consultant decided that after a year of being on the high dose, the side effects were quite extreme and that the dosage should be reduced.  At his scan earlier this year the nodules had changed and enlarged, the consultant said the changes were "miniscule" and a non expert might not even have noticed the changes.  He put him back up on the higher dosage of sutent and scanned him again after one month, he was told today that there had been more changes to the nodules, very small again but nevertheless the consultant believed the sutent had now stopped being effective. 

His consultant is going to now start him on Everolimus and I just wondered if anyone had any experience of how effective it is, the side effects and the average time it is likely to keep things under control before he is likely to need to move on to the next drug, which we understand is likely to be Axintinib.  The consultant seems very positive about things, even with this set back.  Scans show that it is still confined to the nodules in the lungs and there has been no further spread.  He is still going to the gym every day, working and generally living life to the full - you would never know he is living with cancer, he is just so positive, although his hair and eybrows did turn white!

This is the first time I have ever used a forum like this, so I do hope I have posted it in the right place?!

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

What a wonderful CT report. Keep up the great work.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Your report made my day; congratulations! When one person wins a battle on this Board, we all win. Here's to winning more battles and VERY SOON the war!!!

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Thanks for sharing the good news

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Vin,

Great to hear you are winning the battle, it lifts the spirits of everyone here when someone gets a good report especially someone in the thick of the fight like you. You are a dragon slayer! Not long ago there was little hope for anyone not dx'ed early, but great strides are being made. I believe, with you, that you will be here for the celebration when this beast is gone for good. You have a great attitude!

Rock on,

Gary

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

Thats awesome! Starts my day with a big ass smile!!! Keep it going and I'll be there with you shortly. Fox.

vdm13
Posts: 35
Joined: Jul 2012

... I should have. Thank you.

Joe_fh
Posts: 47
Joined: Aug 2012

That is very cool vdm13.. You keep on kicking it's tail end while we applaud, loudly.

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

Thanks for your keeping us updated on your progress. God is looking after you. Love to hear Great News!!!!!

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Now this report warms my soul! Tomorow, 9/19, I go in for 6 week scan results and most likely follow-up treatments, the two of which are Sutent, or IL-2, and I'm sitting on a fence still. This kind of report wants to sway my thinking away from the IL-2, but I believe heavily in the recommendations of the medical community. We'll see. Keep up the fight, and we'll see ya in the winner's circle!

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

Hope your scans are good.
The way I came to look at it is: Biologics have a small chance of working compared to Sutent, but they have no side-effects so they are worth trying before Sutent. Eventually you will have to get to Sutent, especially because some clinical trials or treatments are allowed only if you have failed Sutent or equivalent!

My oncologist originally assumed I wouldn't want to go through the IL-2 ordeal considering the 10% chance of success, and described the 4-week on (accumulated in hospital) ordeal. I was on the fence. I was drawn by the lack of having to take any treatment or any side-effects if it worked. But then I found out that halfway through (after two weeks in the hospital with a break inbetween) that they would be able to determine if it was working or not. That clinched it for me.

Also I was pretty fit and had absolutely no side effects. This made me a much better candidate than someone who was fairly advanced and weak.

As I've stated elsewhere, my result was stability, not shrinkage, at the halfway point, so I was not qualified for the 2nd half. HOWEVER, the stability lasted for 2 years! (More than some people get out of the full IL-2 treatment) so I consider it worth it for me.

love_of_my_life
Posts: 28
Joined: Jul 2012

Vin,

That is such great news! You, along with everyone on this board, have been in our daily prayers.

Keep up the fight!

Tom and Holly

I am alive
Posts: 217
Joined: Jul 2012

Fantastic!!! I LOVE hearing results like yours!!
Keep 'em coming!!

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Keep up the good work! I am so thrilled for you.

Phoenix Rising's picture
Phoenix Rising
Posts: 151
Joined: Jul 2012

So there IS a pot of gold at the end of a cloud burst, too?! I love hearing great reports like this, vdm13. Makes me wanna kick some cancer butt!

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

Vin, you are on the $. You are right to keep with what is working and then look forward to the next step when there is a cure. (although your current treatment seems effective) One of these days all of us survivors will get together. Money will not be an issue as I think Wedgie is loaded and he will be happy to send us all to Bermuda. Thanks Wedgie!

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

I have never been to Bermuda. Count me in!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

When do we leave???

foxhd's picture
foxhd
Posts: 1867
Joined: Oct 2011

I only bring this up because while waiting for radiation I read a PEOPLE magazine. It said Reba Mcintire took 41 people to Bermuda. "I'm a little bit country, you're a little bit rock n roll!" Besides, I'll only drink cheap beer if that helps. Hell, I'll even sleep outside.

angec's picture
angec
Posts: 621
Joined: Mar 2012

I will come along also, someone has to drive after all of those beers! ;)

Jeff2159's picture
Jeff2159
Posts: 58
Joined: Feb 2012

Good job Vin and it looks like I will go off the Sutent after only 2 partial cycles to concentrate on mouth as the sutent just dissolved my skin graft of late June. Here is my recent scan-- alot of prayers helped too

IMPRESSION:

1. Stable mild amorphous soft tissue in the anterior superior mediastinum

which likely represents thymic hyperplasia.

2. No enlarged mediastinal or hilar nodes noted at this time.

3. Previous left nephrectomy.

4. No evidence of metastatic disease noted at this time.

HISTORY: 53-year-old male with metastatic renal cell carcinoma.

Exam Date 09-13-2012 ACC# 1244531

FULL RESULT:

Prior exam:

TECHNIQUE: Images through the chest, abdomen and pelvis on a 16-slice

MDCT scanner were reconstructed at 2.5 and 5 mm thickness. The images

were acquired precontrast through the abdomen and post bolus IV infusion

of 125 ml of nonionic contrast (Isovue 370). In addition, coronal

reconstructions were also performed of the upper to mid abdomen during

the arterial and portal venous phases The patient received oral contrast.

Up-to-date CT equipment and radiation dose reduction techniques were

employed. CTDIvol: 14.80-29.01 mGy. DLP: 4070.40 mGy-cm.

CHEST:

MEDIASTINUM: There is stable mild amorphous soft tissue in the anterior

superior mediastinum which is essentially unchanged from the prior exam

and likely represents thymic hyperplasia. No new enlarged or abnormal

lymph nodes are identified within the mediastinum. Previously noted small

right paraesophageal and right hilar nodes have not increased in size.

The heart and pericardium are unremarkable in appearance.

LUNGS: No masses or infiltrates are seen.

PLEURA: No pleural effusions are seen.

OTHER STRUCTURES: No axillary adenopathy or chest wall lesions are

identified.

ABDOMEN:

LIVER and SPLEEN: No focal abnormalities are seen in the liver. The

spleen is normal.

BILIARY TREE: The gallbladder is unremarkable. No biliary dilation is

seen.

PANCREAS: Normal.

ADRENAL GLANDS: No masses are seen.

KIDNEYS: There has been previous left nephrectomy. The remaining right

kidney is unremarkable and unchanged.

LYMPH NODES: No adenopathy is seen in the abdomen.

STOMACH AND BOWEL: No abnormalities noted.

PELVIS: The bladder is intact and unchanged. The prostate is within

normal limits for the patient's age and unchanged from the prior exam No

enlarged lymph nodes are seen. No pelvic mass is identified.

BONES: No bone lesions suspicious for metastases are identified.

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