1st follow up scan not good

Our prayers are with you
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

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

LISAinTN said:

Praying for you,
Praying for you, Nanalou.

Blessings,
Lisa

How do they know that it is
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

LISAinTN said:

Praying for you,
Praying for you, Nanalou.

Blessings,
Lisa

Sutent; green tea.
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.

In our thoughts
Will be Thinking and Praying for you, Nanalou.

Doug

etrainor said:

May I ask what your initial
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

Missed this post. Nanalou
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 said:

Brain scan was clear
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

Sutent, diet, histology
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.

newenglandguy said:

Nanalou - wishing you the best
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.

Sutent etc
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.