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Scan results

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

Well I have my scan result - not great but also not surprising.

1. The lytic lesion on L1 has increased in size and there is some soft tissue bulging into the spinal canal. Immediately referred for an MRI which I also had today. Possible referral to spine surgeon for surgery. She did tell me however tell that it is possible the radiotherapy I had may not have taken effect yet?

2. New 18mm lymph node in aorta pulmonary window

3. A previous nodule lower lobe on left lung of 3mm now 6mm. There are also sub mm nodule in the periphery of the mid zone off left lung and 2 pleural based nodules in right lower lobe posteriorly 5mm and 6mm.

4. Left psoas lesion increased from 8mm to 10mm

Not to mention nodule on my thyroid which has also increased but I am booked for surgery on 4 July.

Oncologist will review MRI and speak with spinal surgeon and then await thyroid surgery result to consider further treatment which appears will be Votrient. She has also mentioned possible inclusion in a trial for Nivolumab (sp?) vs envirllmos (???).

Certainly not the report I wanted but my oncologist appears to be covering everything. Any advice???

 

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

Read everything you can here about our own foxhd...his story is similar and he is still kicking up his heels long past his expiration date thanks to MDX-1106 aka Nivolumab, then on to Alice and John (one putt), just 2 of our current success stories with more beginning.  No reason you can't join them!

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Suekub:  I've been waiting for you to post your results....well, you said you wanted to get started with things and now it seems like you can.  My only advice is to take each of the lesions/nodules separately and not be overwhelmed by their totality. Sounds like surgery will deal with some and drugs will attack others.  You mentioned that your husband has passed.  I hope you have family and/or friends to share this with.  Don't take on this fight alone.  We'll always be here for you to share your victories and frustrations but it's always nice to have someone in physical proximity.  As for now, even though it's winter in the land down under, I always found that the smell and taste of chicken on the BBQ grill brought good feelings and pleasant thoughts.  And remember that in the fight against cancer we take no prisoners!   

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

Thanks Gordon. Unfortunately I need to attend my appointments alone. No nearby family, my Mum lives 500kms away, my 2 sisters not close by and my brother lives in the US. All my friends work and I hate to ask them to take time off work for me (I have never been good at asking for help lol). My daughter is 16 and is of course at school. Writing this down sounds so sad!! 

Just want to get surgery out of the way so I can start medication. Miserable day here in Sydney - wet and cold so BBQ out of the question. 

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

One often hopes for a better scan result but the plan sounds sensible to me.   Votrient seems to be the favourite flavour at present, with numerous members here doing well on it, and nivolumab is the most promising new agent, which we all hope will get expedited approval and be on the market soon.

I'd love a shot at nivo but I would be disappointed if I got into the trial with Everolimus and was assigned to the Everolimus wing which I would regard as drawing the short straw. 

danbren2's picture
danbren2
Posts: 166
Joined: May 2013

Take one day for the tears and questions of why! Then begin your fight! We are always here for you and this group is a tremendous help! Love and prayers to you!

Galrim's picture
Galrim
Posts: 267
Joined: Apr 2013

And try to focus on the wide array of new treatment options available (and more in the pipeline). The statistics and historic data especially in the area of advanced disease is outdated. And as mentioned elsewhere in this thread, look at the stories of Fox and alike. Someone has to get through the needles eye, that someone might as well be you...

/G

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

Yes, it does appear your oncologist is on top of the issues, and I agree with Gordon that it's good to look at each issue singularly, rather than trying to absorb all the issues at once. While, as you said, it's not the results you had hoped for, each issue is being addressed. 

You probably are experiencing feelings of desperation right now, but take some deep breaths--close your eyes--and re-experience some vivid, happy memories. Know that more happy memories are in your future and make a commitment to learn all you can about helping yourself to beat this disease. You CAN do it. Take Gary's advice and read Fox's history, what a GUY!!!! My husband, one putt, is one of those "what a guy" guys too and doing extremely well. His history to date is documented under his blog tab (one putt).

You can get through this, just take one step at a time. I  am obviously a  biig fan of Nivolumab and Votrient because of John's success to date, and I would jump at the chance to enter into a trial. You will have options, so turn your worry and desperation into confidence and determination that you can beat this. You're stronger than the Cancer!

 

 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

A post to this web site only takes .04839 of a second to cover that distance.  As others can attest I have danced in and out of this site for several months.  Sightseeing and commenting when appropriate.  This site is never lacking for folks to give encouragement and hope.  If you'll make the committment to keep us informed, we and specifically I will make sure that you always have someone thinking and praying for YOU specifically.  I promise to seek out your posts on a daily basis and respond when appropriate.  You obviously have a challenge ahead of you, but think of all the people that you either know or have heard of who have died and didn't expect to since you were first diagnosed. James Gandolfini comes to mind.  I will paraphrase a saying I heard once:  Live today like it's your first day, your last day, your only day.  Take care and stay in touch. and a BBQ is never out of season.....

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Just re-read your info page.... definitely not a joyous year for you.  The good news would seem to be that New South Wales has the highest statistical incidence of kidney cancer in the world.  I'm guessing some of the most experienced doctors and aggresive treatment options are there as well.  If you're going to come down with RCC at least you're in a place that has experience.  Lucky you!

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

Wow, wasn't aware of this fact!  Incidentally melanoma (my husband's cause of death) is classified as Australia's cancer due to high incidence here for obvious reasons. Not a position we like to be on the worldwide stage. Also appears that some of the trial drugs in the pipeline are used for both cancers.

Thanks again for your thoughts and care. I will most definitely will be updating this site on my journey ahead. Had abad day yesterday    Finishing with the MRI which I did not enjoy - was so close in pushing the bottom but persevered. I think the longest 45 minutes of my life. My doctor is so proactive in getting things done as quickly as possible, lining up doctors, scans ect during the consultation. Yesterday I was with her for 1 hour 15 mins - felt sorry for whoever had the appointment after me.

Sue

PS BBQ definitely out I am not going outside in the torrential rain to throw something on!

 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

MRIs.... I firmly believe that one reason my tumor was as advanced as it was upon discovery was because I couldn't endure the claustraphobia of the tube.  The MRI was followup for a non-related procedure and I'm sure would have found the little nasty at a much earlier stage. SO, my respect and congratulations for your endurance.  My first successful MRI was after diagnosis as they searched for metastisis.  I made clear my fears and so they gave me some medication....communication between staff was not perfect and so when I received the meds right before the MRI I hallucinated upon entry into the tube......the great news was that I didn't realize it and had a great time....when it was over I would have gladly paid $100USD to go back in for another ride!!!!! Now I just wear an eye shade and try to listen to the various sounds of the magnets flying around.  as for the BBQ.. that's what umbrellas are for.

Suekub's picture
Suekub
Posts: 112
Joined: Apr 2013

 surgery went ahead on July 4 (hope all of you in the US had an enjoyable holiday). Total thyroidectomy required, now need to wait for pathology result which will be known on my review with surgeon on 16 July. The waitingis always the hardest part if each procedure! 

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