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1st follow up scan not good

NanaLou
Posts: 69
Joined: Oct 2011

Well I got the results from my CT today. It is in several lymp nodes on the side I had the Kidney removed from. The largest being 4.6cm. I will be starting Sutent soon. I have to do a MRI of my brain Sat. Then I will start treatment after that. Wish me luck and say some prayers!

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

A lot of people have had really good results from the sutent. It can shrink or even eliminate kidney cancer metastasis.

Have they biopsied the lymph nodes or talked about removing them? Have you had a chest xray yet?

I, too, have had to have one follow up test after another because something "suspicious" keeps showing up on each test. So far, everything that has popped up has been benign.

icemantoo's picture
icemantoo
Posts: 1655
Joined: Jan 2010

NanaLou,

Over the past 9 and 1/2 years I have seen many of our members including those who come into this like you with a lot more baggage than I benefit from the new drugs and treatments many of which were not available a few years ago. Our prayers are with you conquor this monster.

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Good luck Nancy - count me as another who's thinking of you. Remember the Stephen Jay Gould article! Have you tried the Essiac tea? I'm drinking more green tea which, fortunately is a tea I've always liked. I'm wondering whether in a few days time I'll be discussing whether Sutent is possible for me too. If so I guess we can compare notes.
I hope that 4 year-old had a great Christmas.

braswelm's picture
braswelm
Posts: 41
Joined: Oct 2011

Wishing you the best, NanaLou, and our prayers are definitely with you!
Mike

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Give 'em Hell, Nana!

NanaLou
Posts: 69
Joined: Oct 2011

I will give them as much hell as I can. I am at work today. I am far from giving up. I am going to try to see if I can work on this sutent. Time will tell. I have to get it first. They did a CT of my chest at the same time. It only shows the 4mm spot that was there in october. I have to have a MRI of my brain Sat. Tex- I haven't gotten the tea yet. The oncologist said not to get it because it was a preventative measure. I don't see what it would hurt. He told me to drink green tea. I was told they could not cut it out and a biopsy was not even talked about. I am pretty postivie. I have my moments of crying. I feel pretty good to have this cancer in me. Kinda still don't believe it all. Thank you all for you responses.

NanaLou

PS that four year old had a great christmas. She is spoiled rotten.

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

Dear NanaLou,

You are a battle tested and proven warrior! The ups and downs come with the fight, but we always bounce back more fierce than ever once our minds are set and a battle plan is in place. Stare the demon down and spit in his eye, attack with extreme prejudice, use every weapon in the arsenal, take no prisoners, and remember the Lord is always at your side.

His will be done,

Gary

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Praying for you, Nanalou.

Blessings,
Lisa

snydergirl
Posts: 15
Joined: Dec 2011

How do they know that it is in Local lymph nodes, were they swollen at time of surgery? or have they swollen since surgery.

Jeanne

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

As iceman says the scene has changed a lot since his first engagement with the enemy and as Jamie says some people get a lot of benefit from Sutent. Good luck and more prayers for the upcoming investigations.

I was chuffed to hear that your oncologist recommended green tea and I went straight to my kitchen and made myself another mugful. It's a good source of fluid intake and has a pleasing fresh astringency that I really enjoy. Whenever we eat out Chinese we drink gallons of the stuff. It's well established that it reduces depression so when your mood gets down it's a useful part of your armoury. It gets favourable mention in the excellent Wikipedia entry on the Management of depression.

So glad that that 4 year-old got spoilt rotten and I just hope someone spoils you as much as you deserve.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Nancy, as iceman says, the scene has changed a lot since his first engagement with the enemy and as Jamie says some people get a lot of benefit from Sutent. Good luck and more prayers for the upcoming investigations.

I was chuffed to hear that your oncologist recommended green tea and I went straight to my kitchen and made myself another mugful. It's a good source of fluid intake and has a pleasing fresh astringency that I really enjoy. Whenever we eat out Chinese we drink gallons of the stuff. It's well established that it reduces depression so when your mood gets down it's a useful part of your armoury. It gets favourable mention in the excellent Wikipedia entry on the Management of depression.

So glad that that 4 year-old got spoilt rotten and I just hope someone spoils you as much as you deserve.

robert_douglas_smith's picture
robert_douglas_smith
Posts: 84
Joined: Oct 2011

Will be Thinking and Praying for you, Nanalou.

Doug

etrainor's picture
etrainor
Posts: 8
Joined: Dec 2011

May I ask what your initial results were after your nephrectomy? Was your pathology report clear and then at your at your next check up did they discover the nodes? I wish you well on the Sutent. Please update us on your progress. Colleen

newenglandguy
Posts: 66
Joined: Jun 2011

Missed this post. Nanalou saying prayers for you. Please keep us updated. Hoping to hear you indicate your brain scan was clear and you've selected a course of action.

NanaLou
Posts: 69
Joined: Oct 2011

The brain scan was clear. I started Sutent on January 30th. So I have been on it for 2 1/2 weeks now. So far so good. Only side affects so far are taste change and acid reflex has worsened. I am getting red spots on me, but I have always had sensitive skin. I am still working and for the most part don't even know I have Cancer. When I had my surgery in November the Dr. thought he had gotten it all. My scan in January showed several lymph node in the area where the kidney was removed. My path report from surgery says it is 95% sarcomatoid. Which is highly aggressive. I had blood work done on Monday the 13th. It is looking better so maybe it is working. I go back next month for more blood work and then will have a scan sometime in April. I have been trying to eat a better diet. More fruit and veggies and less junk. I say a prayer everynight when I take my pills. So I feel like I am doing all I can do. Thank you all for your prayers. I wish you all great health!!

Nancy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Nancy, I'm intending to add some material to the Sarcomatoid thread but meanwhile I must add my good vibes and express delight at the clear result of your brain scan.

We must be at the extreme end of the sarcomatoid spectrum - not cheering but there is light at the end of the tunnel! Do you know what your original cell type was? Mine is/was chromophobe which has a slightly better prognosis than clear cell until we go sarcomatoid when all bets are off and we enter an even more mysterious domain than the rest of the bewildering world of RCC.

I'm glad to hear you're optimising your diet which is a very good move.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Nancy, I'm intending to add some material to the Sarcomatoid thread but meanwhile I must add my good vibes for you and express delight at the clear result of your brain scan.

You and I must be at the extreme end of the sarcomatoid spectrum - not cheering but there is light at the end of the tunnel! Do you know what your original cell type was? Mine is/was chromophobe which has a slightly better prognosis than clear cell until we go sarcomatoid when all bets are off and we enter an even more mysterious domain than the rest of the bewildering world of RCC.

I'm glad to hear you're optimising your diet which is a very good move. I'm unclear (chromophobe!!) about the indications for Sutent treatment. I imagined it was only for clear cell patients, but maybe you are basically clear cell before turning sarcomatoid? Is that corect, or are they uncertain?

NanaLou
Posts: 69
Joined: Oct 2011

This is what it says on my path "The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has coventional clear cell features."

Tex- Are you on any treatment?
I was doing pretty good with the treatment. But, this has been a rough weekend. Really bad headache,maybe a migraine, not sure never had one before. No appetite nothing taste right. Scalp very tender and sore. I have one more week then I get a two week break from the sutent. Then back to it. Can't wait for the break!

newenglandguy
Posts: 66
Joined: Jun 2011

Nanalou - wishing you the best on your path with Sutent. Sounds like you've been having a few of the common symptoms, so please let us know when you hiy the break, how the last week went. Hoping the headaches disappear and your sore scalp symptoms fade.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Nancy,

First of all, do take a look at what Jam66 (Jennifer) says about her experience on Sutent on the "Stage 4 metastatic ... " thread. It's very encouraging.
Then, when you can find time, listen to the recorded workshops by Cancer Care that I mentioned (and gave a link to) on the thread on the subject - a good entry point would be

http://www.cancercare.org/connect_workshops/4-cancer_coping_2011-06-01

Tweaking the dosage parameters in the administration of the new targeted therapies seems to be an important part of the work of the experts - to get the best possible combination of benefits and minimal side-effects.

My first follow-up CT scan is on 29th and I suppose it will be a little while before we get and review the results. After that, who knows? At this point I'm not on anything and it will be strange if/when I am. Prior to my diagnostic scan it was:- never really been ill, no allergies, not on any form of medication. Meantime my self-prescription is as follows: each week 4 rounds of golf, one or two (soon more I hope) sessions on a cross-trainer, several upper-body weight-lifting workouts, 3/4 rowing sessions of 5,000m or 10,000m. As the temperature rises and the winds ease, I'll aim to fit in some LSD (long, slow distance) running. Coupled with this, 2 daily TM sessions and Jerry White's MAARS program. Also, attention to diet (always been good) and attempt to sleep more than six hours a night.

On the diet front, I have a Vitamix I bought an hour ago still in its box under my feet as I type and my Wife and I will be looking to folks here for advice, tips and recipes to get the best out of it!

Your path report, along with mine, indicates that we are in an expanding rcc universe in which our sort of cases seem to be getting further away from all others. RCC is one of the less common cancers and we're a bit unlucky, maybe, that we have rarer versions of RCC about which less is known. Yours is clear cell but now with rhabdoid components - pretty unusual and I'm in the much less frequent still chromophobe, now mostly sarcomatoid, category. My Wife and I have only one offspring, our Daughter, who is trying to cope with the illness of several close relatives (while herself bi-polar and having previously had ME (PVFS) for quite a few years). She has the gallows humour of both her parents and accordingly offered me the consoling thought - if your condition becomes any rarer, maybe they'll have to name it after you!!

I believe adult rhabdoid features and sarcomatoid change have been put in the same rag-bag of rare and not much understood variants of RCC. However, the intense research efforts going on are producing findings such as this:

"Adult rhabdoid renal cell carcinoma can in some cases arise from conventional (clear cell) renal carcinoma and should be considered a clinically important form of renal cell carcinoma separate from, but analogous to, sarcomatoid change." (The conclusion in a paper the abstract of which is at http://www.ncbi.nlm.nih.gov/pubmed/12456212 )

As against pediatric rhabdoid RCC, it does seem as if sorafenib (Nexavar) is another possible useful treatment.

jam66
Posts: 55
Joined: Jun 2011

Texas_Wedge,
Welcome to the Vitamix cult!! My favorite smoothie is a green smoothie - about 1/2 cup water, handful of green grapes, some pineapple, half a banana and a couple handfuls of kale (stems removed). If I have mango, I throw that in as well. Use ice if you're not using frozen fruit. I swear you'll love this blender! I use mine every day....

And by the way, I love reading your posts...all very informative AND entertaining. Thank you!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks Jennifer. I have all those ingredients in the kitchen (including the kale) but we've both been so busy the Vitamix is still in its box. I'm sure we're going to love it. When I suggested getting one my Wife didn't exactly put up a fight!

I'm so glad you're doing so well on Sutent and I'm sure it will be cheering to Nancy and others here.

Thank you also for the kind words about my posts and let's hope we remain able to exchange compliments for a long while to come.

TW

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Jennifer, I'm sitting with my first green smoothie, as per your recipe, and enjoying it greatly - thanks for the recipe! My Wife always tells people that anything is alright with me so long as it's coloured green.

If this is just the start of Vitamix heaven I can see myself turning into a smoothie! (OMG, it's happening already - my Wife has just gone out to get her hair done and I told her to come back looking even more beautiful. Maybe my diet's just been getting too cheesy?)

I'm following in Nancy's footsteps and about to have my first follow-up CT on Wed. to discover what a "predominantly sarcomatoid" tumour might have been getting up to in my system. If one's body is a temple mine is not too badly eroded, for an ancient monument, and I'm trying to keep it that way with good diet, TM, MAARS, and rowing this afternoon - following Fox's lead of being determined to ensure that when I die I'm really healthy :)

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Nancy, I was just wondering how you are doing with everything? I hope you are doing well. Take care.

Blessings,
Lisa

NanaLou
Posts: 69
Joined: Oct 2011

I am a little better than last week. The meds have made my blood pressure go up. I went to a locale Doctor last week with a major headache and sore throat, thinking I had caught a cold.. He said the throat looked good. All of these are side affects of Sutent. He gave me some meds for the headache. I still have a sore throat but no headache since about Monday the 26th. I am on my two week break. Go back on the pills the 12th. My taste buds are starting to come back a little. Somethings still taste a little funny. I really want some Mexican food and might try to eat some this weekend. I am drinking my green tea and trying to enjoy this two week break. I will not get another scan until sometime in April after I have had two full cycles of the Sutent. Thanks for asking Lisa. And by the way I am in TN also.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Good to hear it's not going too badly Nancy - we rare types have to stick together! Rae is coping well and I wonder how djc2 is doing. Glad to hear you're carrying on with the green tea and I think I'll go and make myself another mug in a few minutes time. Are you still packing in plenty of fruits and green veg? I'm certainly finding it very easy to do so with newly acquired Vitamix (but still chewing also - just in case Jon reads this!).

I hope you manage to get and enjoy that Mexican food and benefit from the 2 week Sutent break. Next milestone will be the good scan results you're going to get in April!

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Nana, I think you are one tough lady. Dig your heels in. Can't wait to hear your next good report.

djc2
Posts: 17
Joined: Nov 2011

Thanks you Texas_wedge for inquiring about how I am doing. I had clear cell rcc with 50% sarcomatoid and rhabdoid features. My tumor was very small when discovered over six months ago (1.8 cm). A bladder stone rubbing against my bladder wall caused bleeding into my urine after playing basketball. This led to the discovery and subsequent removal of a small, but what turned out to be, agressive grade 4 tumor (along with part of my left kidney). I like to think that basketball saved my life! I know that at least it prolonged it some. Despite the tumor being small, due to the agressive nature of sarcomatoid features I am on a three month check cycle. Last week I had my six month check and am happy to report that they found no evidence of reoccurance in the remaining parts of my left kidney, nor presence of cancer in the lymphnodes or anywhere else. As Texas_wedge points out, this is a very agressive form of cancer that not too much is known about. I do know from these pages that some of you, like Tex and Nancy and Rae, are dealing with it heroically. You inspire me and I hope the thought of someone whose Sarcomatoid rcc has not progressed gives you more hope as you cope with yours.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

djc thanks so much for taking the trouble to respond and for giving us the good cheer of hearing how well you are doing. We're all different but how are you living - all tips welcome to us other sarcomatoid types. I presume you've not been on any adjuvant therapy?

I must acknowledge that it gives added force to MNGirl's observation about small but aggressive tumours. Have you been given any guesses as to how long you'd had the tumour and was it much the same size in the path. report as when first spotted? I presume it was classified as stage 1 grade 4 which must be very unusual.

djc2
Posts: 17
Joined: Nov 2011

Tex, Despite the agressivness of our type of tumor, both my (very experienced) surgeon and an oncologist I saw at Mass General Hospital did not recommend any adjuvant therapy now since the tumor was so small, had clear margins and there was no sign of spread. (The tumor showed at 2.4 cm on the initial CT scan, but was discovered to be only 1.8 when removed. You're right it was classified T1a, Grade 4 with sarcomatoid and rhabdoid features...very unusual. No one has any idea how long it may have been there, but I did have an ultrasound of the same area looking for kidney stones just one year earlier which showed nothing. My hope is that the coincidental bleeding from the bladder stone was a stroke of great luck that led to discovery of a very young, very agressive tumor before it had too much chance to grow and/or spread.)

After the surgery and path report I went to see a homeopathic physician to discuss anything I could do to build up my immune system, hoping to forstall any reoccurance or spread from happening. On his advice, I am taking a number of supplements in my diet now, including 3000 mg/day of omega three from fish oil and flaxseed and 2000 mg/day of a blend of mushrooms. I am trying to eat better, but I must confess I have a long way to go to a diet of only fruits and veggies! Oh, and I am still playing basketball! So far I have not had my usual winter cold and, as I said, my six month check up was clean. I am visualizing my 62 year old body rebuilding its fortifications to resist whatever comes my way.

MNGirl is certainly right that the grade and other characteristics besides size are important prognostic factors. There is no denying that the grade and presence of sarcomatiod features makes our form of cancer more agressive and even with a small tumor that has not reoccured or spread at 6 months,I am very concerned... but they appear to be only at the beginning of studying why and how this transformation takes place. Only recently (as I think you pointed out) have they recognized sarcomatoid as a characteristic which may evolve from any of the subtypes; hence they may quickly also discover something important about these transformations to sarcomatoid which may in turn help figure out how to combat it or reverse it.

Thanks for your fighting spirit and sense of humor. Best wishes for continued success in combating your sarcomatoid transmutation of rcc. May your wedge send the ball gently, but directly to the cup.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hey Nancy, or should I say, Neighbor! I'm in the East TN Valley. Are you nearby? If you are and I can ever help with anything, please let me know. I'm about 30 minutes west of Knoxville.

I'm glad you're enjoying, and getting a break from, the Sutent. I am keeping you in my prayers.

Blessings,
Lisa

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

Hear you are doing well Nancy. Keep being positive and keep posting. We are here for you!

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