Oncologist visit and next step!

brea588 said:

Dginnie

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. 

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

Djinnie x

twinthings said:

spare bedroom

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

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

brea588 said:

Hi Djinnie

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. 

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

Suekub said:

Update

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

 

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:)