1st follow up scan not good

Texas_wedge said:

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.

Vitamix!
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 said:

Vitamix
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

Green smoothie
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

Texas_wedge said:

Soldiering on
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!

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

Texas_wedge said:

Soldiering on
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!

sarcomatoid and doing well
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 said:

Doing well
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.

Doing well
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.