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Oncologist visit and next step!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

I had a visit with my ever friendly Oncologist yesterday, Dr War. I took my scans, both my recent and previous scan with me for comparison. I was on the edge of my chair whilst she was going through them. The little tuts and groaning noises she makes while looking at them, certainly don't help the stress levels. Anyway! Yes we have growth, and no she doesn't believe it to be caused by inflamation. Oh Bum!! She is also concerned about the sizeable three growths next to my airway. These are the cause of my cough, which has started again recently. The tumours in my kidney are now larger than the original tumour.  The removal seems to have been a pointless exercise. I asked her if the kidney can be removed, but the response was 'no surgery!!' Anyway! She feels with the amount of cancer in my body 200mg is just not cutting it.

So! The way forward! I was given two options. To continue the Votrient taking 200mg and 400 mg on alternate days, and hope my liver becomes a team player. If it does I will be back on 400mg long term. Or! Change to Afinitor. I have opted for the Votrient, I don't want to give up on it too soon. Also if the growths near my airway are not responsive, I may be looking at radiotherapy treatment. Happy days!

I will be doing some major praying for Votrient's success and a compliant but happy liver! 

 

Djinnie

 

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

You've got ALL my support, vibes and Karma coming your way. I gladly deflect all thats coming to me and will send it your way. Fox.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Oh thank you Fox, what a lovely thing to say. I am so touched by that! I am certainly working my cloggs off to change my Karma!

 

Djinnie xxx

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Sorry to hear your results weren't so great this time. Bother!!! Hope you can move on with your new plan successfully. I will be praying for you from this side of the world and with all your other many friends here that pretty much guarantees you 24 hour continuous prayer and good wish support. You are lovely and deserve it! Hang in there.

Hugs, Melissa xox

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Good wishes and prayers for Votrient to work and your liver to cooperate. Stay strong! xoxo

Pandabear1011
Posts: 123
Joined: Jun 2014

Prayers and Positive Vibes coming your way all the way from Texas...:)

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Thank you Apny and Panda, I am very grateful for the prayers. Panda just out of interest where are you in Texas, I used to live near Dallas, I was there for ten years.

Djinnie x

Pandabear1011
Posts: 123
Joined: Jun 2014

Howdy, Djinnie...I live South of Houston in League City. It is in Galveston County. And, Yes..It is hot and humid here. So thankful for A/C and our swimming pool!

aamdsi
Posts: 284
Joined: Apr 2014

all fingers and toes crossed (if crossed eyes, would be too hard to drive).

 

Oh and hugs! You sure deserve some good news

Srashedb
Posts: 482
Joined: Dec 2013

there is not much I can say about the treatments but just know that all the way from CA, good thoughts and energy is coming your way.

your posts reelect a delightful woman and again, I wonder if additional meds might exist in the US.

Sarah

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Dj... sorry to hear your news.. booo...   Did you discuss Inlyta with your Dr..?  Being you and I both had a positive response to Votrient, Inlyta works very similar, but is more Liver friendly.  That may be another option.   No matter what, we are behind you...

Ron

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

DJinnie I'm so sorry you are going through this.  I will be praying for you.  I hope your liver will give the same positive feedback you always give!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Cheatinlil thanks for those kind comments! I am sending lots of positive thoughts to my liver, I just hope it's paying attention, lol!

You take care:)

 

Djinnie x

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Ronnie I didn't discuss Inlyta, in fact it wasn't on offer. I have just checked though and it seems to have been approved for use by the EU Commission in 2012. It has been on offer in the UK so I am wondering why it's not the case here. I will make some enquiries, the French are always slow to introduce anything new, everything is about 30years behind here. I appreciate the advice and the support:)

 

Djinnie x

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Dj.. suggest you ask.. I know in some places they have a specific "sequence" of drugs.  I think this is terrible..!  So, if you "bypass" one drug, you can not get it later.  Hope that is not the case for you.   Yes, I think Inlyta was only approved last year for some parts of the U.K.  I remember T.W. going through that hassle.. sigh.  Sometimes rules are not a good thing...

Oh and remember... "There must be...... 50 ways to love your Liver..."

Ron

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Thankyou aamdsi for the hug, it's very welcome today! 

Sarah thanks for your kind comments. With regards to better drugs in the US that would not be an option for me. I know the treatment is so much better there but without insurance the costs would be astranomical. Also I have no way of staying long term, I have been here too long. The whole of Europe is an option when it comes to treatment, but it seems France excels there. It must have been a French participant vote only on that poll. I can always nip over to the UK if I find something better.

Thanks anyway:)

 

Djinnie x

 

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

I am not sure whats going on with the posts, i placed them in order but they seem to have developed a mind of their own!

Dj

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

so sorry to hear ur not so good report.  Hope the liver straightens up and begins to like the votrient.  Will be praying for you daily. 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Thanks Brea for your kind wishes and prayers! How are you doing?

 

Djinnie x

 

 

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

You are such an inspiration to all of us .  You take the bad news and keep encouraging others as if othing wrong with you.  What a person.   Djinnie I am still so sad,  my mother passed two weeks ago and I find myself picking up the phone to call her,and realize that cant be done anymore.  I dream about her, and miss her so so much.  I loved her so much.   I went to my GI doc getting ready for colonoscopy next month for check from colon ca last july  this week and when he examined my abd near liver area I am so sore and tender could not bear for him to press on me.  He is concerned due to all this cancer of kidney then colon , so I have to have EGD and ultrasound of upper quadrant this tue june 24.  I have ultrasoun d of breast mass in sept.  Still all this pain in hip.  After 3rd opinion from orthopedic docs nothing they can do but  physical therapy and pain meds.  This week my doc suggested i go to Mayo clinic for evaluation  so I talk with them and my case is unde review for 2 weeks with ortho docs and then they will call me and let me know something.  I am trying to keep a smile on my face and be as nice to everyone as I can be.  Just dealing with a lot right now.  But I know Jesus is with me and will see me through.  Praying for you and everyone on this forum  Please pray for me. 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Brea, 

I am so sorry Brea, it is so hard when you lose someone so close. I looked after my Mum for fifteen years, I used to chat to her about everything, she was my best friend. I found it very hard when she passed. You know that your Mum is always with you though Brea, just not in the way you are accustomed to. 

Having such a lot on your plate can be very overwhelming. To be in consistent pain though; just makes everything that much more difficult to deal with.I so hope the Mayo can help you to make it more bearable, do let me know how it goes. I will be thinking of you on Tuesday, I always keep you in my prayers Brea. You are a strong lady, you will come through this! Keep in touch!

 

Take care:)

 

Djinnie xx

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Djinnie,

Sending my thoughts, prayers and GOOD Karma your way! Even though you are half way around the world from us, we are close by - always here for you to help you along your way.

In other words "We've got your back, sister!!"

Big hugs

Jojo

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hey Jojo, 

Thanks Jojo, it's a bit of a roller coaster I am hoping for more ups than downs though. I have just started on the increased dose of Votrient. I am working on saying calm and relaxed and keeping a positive head on my shoulders, this has to be doable! 

 

Djinnie x

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Dj, come to the States.  I would love to have you and perhaps you'd have better options here.  I have a spare bedroom that's yours, rent free.  I couldn't be more serious if I tried.  There has got to be a better solution. 

I too, along with everyone else will be praying for good news and a compliant liver.  I'm so sorry to hear that your cough has returned.  Hopefully, it doesn't get as bad as when it first presented. 

Keep hanging in there and if you decide to take me up, I'll help you with the airfare.  I wouldn't make this offer to just anyone but, you are not just anyone, you are someone...someone special.

xoxo

Srashedb
Posts: 482
Joined: Dec 2013

Sindy:

that is a wonderful offer and DJ, I think it's worth considering. What a group! I am sorry to find myself on cancer support groups again but if I had to, this is one hell of a group.

Sarah

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

To hear of yet more bad news for you. As always sending special wishes from here and hope you find a treatment that does the trick. Using Afinitor myself and still not sure whether it is working or not but at least things have slowed down at least. I don't have any side effects except minor fatigue at the end of the day. Happily no more hair issues! After losing my hair using sorafenib and then growing back curly (I have always had very straight hair), going white with Votrient it is nice to have "normal" hair. Inlyta has never been mentioned for me either so can only assume it is not available on our "free" list and therefore would mean a huge financial outlay. Sutent seems to be the next step for me.

Sue xx

 

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Sue, with a face like yours I doubt anybody notices your hair.  You are radiant!!  With a beautiful smile!  But, I am glad to hear that things have slowed down and you aren't dealing with side effects (other than the fatigue).  Hopefully, this wonderful weekend you have planned will not wear you too thin and leave you more fatigued than usual.  Try not to over do. 

xoxo

Sindy

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

That photo was taken at my 50th birthday several years ago and one that i have always liked. Happy 50th to you for today.

I am now at home from my weekend away and as usual it was great. Bit tired but I always am after a weekend away (even before cancer reared it's ugly head) as I never sleep well away from home for the 1st day or so.

Sue x

 

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

 

Hi Sue, 

Thanks for the good wishes Sue, right back at you! It does seem to be a bit of a mine field with these drugs. I am glad that Afinitor is easier on the system  at least,and is slowing things down, are you on the maximum dosage, or is there just the one level of dosing? I have had several weird issues with Votrient, a couple that the Oncologist has never heard of before. The 800 mg blackened my nails, with hundreds of blood splinters, fortunately they have pretty much cleared since reducing the dose. My hair has greyed and thinned too, but I don't care so long as the drug is knocking the flippin socks off the cancer.

How did your appointment go on Wednesday, well I hope?

Have a great weekend:)

 

Djinnie x



Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Thanks Djinnie. Hope the bigger dosage agrees with your liver. From what I understand there is only one dosage for Afinitor (10mg per day) which is one tablet which I take just before bed.

Oncologist on Wednesday was interesting. They are trialling a drug (ASLAN002) but is aimed at all cancers but seems more appropiate for papilliary RCC. We agreed not an option at this time as she seems to think I am doing OK at the present time. She has mentioned some other interesting options that are a possibility in the future and she has told me that she would be happy to see me again when and if necessary. Her registrar is also doing research with another RCC onc and will enquire regarding any PD1 trials in the future.

All in all an enlightening visit which gives some peace of mind that are further options coming up.

Hope you are well.

Sue x

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Sue,

I am glad to hear your weekend was great.  It does you good to have a break with good friends, let your hair down for a bit, you feel so much better for it.

I have my blood tests tomorrow so I will be able to tell if the drug is looking to be a problem. I am praying for at the least a no change in the markers. Having these blood tests each week are turning my arms black and blue. I am beginning to look like a hard core drug addict,lol!

I am glad to hear the visit with your Oncologist was a positive one. You don't seem to have too many issues with the Afinitor do you? My Oncologist believes it will be much easier on my liver, but we are all so different, there is no way of knowing until I try it. If Votrient wasn't so problematic that way, I would be happy to stay on it indefinitely, the other side effects are not a big deal for me.

It looks like you have a very good Oncologist, it is good to be kept informed of possible future treatments. That sort of information makes you so much more optimistic, it makes the future look much brighter.

Take care:)

 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I agree, Sarah. What a group! As I have said many times before - this group is the silver lining of having kidney cancer. Sindy, your kindness warms my heart.  You just brought to life Anne Frank's words "How wonderful it is that nobody need wait a single moment before starting to improve the world."

Djinnie - Sindy couldn't have made that offer to a better person.

Big Hugs and Smiles,

Jojo

 

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Wow! I don't know what to say! I am completely taken aback! What a wonderfully kind offer to make, you have such a big heart lady! And I thank you from the bottom of mine:)

The problems with coming to the States for treatment is the huge costs of drugs, scans and medical care. Unless I win the lottery it would all be totally out of reach. I do sincerely thank you though Sindy, I felt very emotional this morning when I read your post.

I will find the best way forward, I am speaking to NICE today who authorize the availability of drugs. I want to ask about Inlyta, if it's available and the French are not prescribing it, I will file an official complaint. I'll get it sorted, I am nothing if not tenacious by nature, I never give up on anything if it's worth fighting for, you would have to shoot me first.

Thank you my friend,

 

Djinnie xx

a_oaklee
Posts: 567
Joined: Nov 2013

Djinnie.  I find myself quite often at a loss for words.  But you are in my thoughts and prayers.  Your attitude and spirit truly impress me.  I wish the best for you.  Annie

Karen0074
Posts: 64
Joined: Apr 2014

Djinne, sending good vibes your way. we have a good welsh connection xx

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Thanks Karen and Annie the support is much appreciated:)

 

Djinnie x

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