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MaineRottweilers 03-25-2016 12:24 PM

Re: Need input!
 
Glad you got Zometa, I finally did too. My Calcium is still borderline low but they went ahead with the infusion because my PHOS and MG were better and I haven't had an infusion since December.

For your liver values, look into Milk Thistle.

Juls 03-25-2016 03:37 PM

Re: Need input!
 
Hi Tracy
Glad to hear you got calcium levels up. My level at 2.34 is still at low end but glad I increased it. Didn't feel "me" on 1st Zometa . Hope it was because of calcium plummeting and not the zometa!
Have discomfort in my leg today - wonder if its the Zometa?

Have read about milk thistle but not sure if I should take it. I think I read somewhere that milk thistle not good for ER+ or not good if on Xeloda. Just can't remember which one!

Juls

Jackie07 03-25-2016 06:32 PM

Re: Need input!
 
Drug Metab Dispos. 2015 Sep;43(9):1353-9. doi: 10.1124/dmd.115.065086. Epub 2015 Jun 12.
Milk Thistle Constituents Inhibit Raloxifene Intestinal Glucuronidation: A Potential Clinically Relevant Natural Product-Drug Interaction.
Gufford BT1, Chen G1, Vergara AG1, Lazarus P1, Oberlies NH1, Paine MF2.
Author information
Abstract
Women at high risk of developing breast cancer are prescribed selective estrogen response modulators, including raloxifene, as chemoprevention. Patients often seek complementary and alternative treatment modalities, including herbal products, to supplement prescribed medications. Milk thistle preparations, including silibinin and silymarin, are top-selling herbal products that may be consumed by women taking raloxifene, which undergoes extensive first-pass glucuronidation in the intestine. Key constituents in milk thistle, flavonolignans, were previously shown to be potent inhibitors of intestinal UDP-glucuronosyl transferases (UGTs), with IC50s ≤ 10 μM. Taken together, milk thistle preparations may perpetrate unwanted interactions with raloxifene. The objective of this work was to evaluate the inhibitory effects of individual milk thistle constituents on the intestinal glucuronidation of raloxifene using human intestinal microsomes and human embryonic kidney cell lysates overexpressing UGT1A1, UGT1A8, and UGT1A10, isoforms highly expressed in the intestine that are critical to raloxifene clearance. The flavonolignans silybin A and silybin B were potent inhibitors of both raloxifene 4'- and 6-glucuronidation in all enzyme systems. The Kis (human intestinal microsomes, 27-66 µM; UGT1A1, 3.2-8.3 µM; UGT1A8, 19-73 µM; and UGT1A10, 65-120 µM) encompassed reported intestinal tissue concentrations (20-310 µM), prompting prediction of clinical interaction risk using a mechanistic static model. Silibinin and silymarin were predicted to increase raloxifene systemic exposure by 4- to 5-fold, indicating high interaction risk that merits further evaluation. This systematic investigation of the potential interaction between a widely used herbal product and chemopreventive agent underscores the importance of understanding natural product-drug interactions in the context of cancer prevention.

http://www.webmd.com/breast-cancer/e...cer-prevention

MaineRottweilers 03-26-2016 01:36 AM

Re: Need input!
 
How about SAMe?
The Zometa infusion made me feel awful too, I had increased nausea and lots more pain than I am used to. Enough that I am grateful for scans on Monday to rule out progression, my ribs are very painful in some very specific spots. Hope you are feeling better very soon and that it's just a symptom of Zometa doing what it's supposed to do for us.

Juls 03-26-2016 05:14 AM

Re: Need input!
 
Thanks Traci
Hope so too! My 1st scan since bone mets diagnosis is 5th April. Hoping Xeloda is working. I am trying to tell myself that pain in leg, that has just started in last few days, is because Zometa is working!!
Fingers crossed!
Juls

Juls 03-26-2016 05:23 AM

Re: Need input!
 
Thanks Jackie07
just reading this - not sure if I follow but taking its a no or at least needing further research regarding interactions.
Juls

Juls 04-15-2016 08:03 AM

Re: Need input!
 
Just an update!!

At hospital yesterday and my CT report still not back (10 days since CT). So not very impressed.
Got sent to Doctor anyway.
Waited 50 mins thinking, waste of time, as what can we discuss if no results ?
It was a new Doctor who apologised for lack of info but then said she had looked at scan online and that it was ok. I asked what size were bone mets as I have never been told. Seconds later I was looking at my last 2 CT scans and being shown the 2 areas of concern. Well this was a first! In over 3 years I have never been shown anything about my body!! I found this enlightening and could clearly see both mets. Fortunately it looks like Xeloda and Zometa are doing their thing as areas sclerotic.
But I am really annoyed about mets being missed for nearly a year by CT Consultant. I am totally untrained yet I could see clearly the 2 areas involved without Doctor needing to point them out!!
Still don't know actual size but strangely feel better having seen them!!
Yeah - a step forward!!

PeaceMomma 04-15-2016 02:46 PM

Re: Need input!
 
Glad you got some information, even if it's not what you were hoping for. I've always asked for all my images (sometimes, it's hard to get them, but I insist on getting them on disk so I can view at home). Information is power and even if I'm not trained, at least I have something I can point to and ask questions. Sounds like the new dr might be helpful. I hope so. Also glad the Xeloda and Zometa are doing their job!

Juls 04-15-2016 02:55 PM

Re: Need input!
 
Thanks PeaceMomma
I was really surprised that I was allowed to see scans. Not usual in UK! One of the other Ladies has been asking to see her scans for 3 years - still not seen them! Would love to have scan disc..
You are so right - information is power.
Will be happy if I get to see this new Doctor again!

Juls

StephN 04-17-2016 09:55 PM

Re: Need input!
 
I have always been shown my scan if I want or even as a matter of course by my rad onc for following my (non) brain mets. Once you get a reputation for insisting on what you want, things should go easier when you ask.

Juls 10-12-2016 04:59 PM

Re: Need input!
 
Need input again!!

Had a CT on 11th Oct. This morning (12th) got call from my Nurse. Radiographer urgently looking for me yesterday immediately after my CT.. Problem again with my right Femur. Told her no calls so Rad consultant didn't try very hard!!
Met in Femur now requires intervention!! Scan sent to Ortho Consultant & they will phone later!!

I got a call a few hours later from Oncologists Registrar. She said " We want to keep you going for a while yet!" Bone needs to be "nailed" asap. Can you go to your local hospital tonight for operation tomorrow.
This call happens while I am in Wedding dress shop with my Daughter.
The shop is 21/2 hours from my home!!
What should have been a lovely day ruined!! The Doctor knew I was away from home. I told her a bit difficult to get back before 5pm! I was then told Orthopaedic Surgeon was going to call me in next 15 minutes. Sure enough phone goes again and same Doctor tells me that Ortho. Surgeon now saying I don't have to go tonight. It can wait and they will see me at their clinic on Tuesday.
So here I am in the middle of a Bridal shop - where I burst into tears. In front of my Daughter and a Lady I have just met! Can my day get any better!!

The Doctors are suggesting "putting a nail through bone" (bone has a fracture) to stabilise it. Doctor told me this was preventative treatment not curative. I am disappointed by this and feel that this is not enough. The area of bone affected is just below ball at top of femur. A tricky area!
Has anyone had this treatment? Any suggestions.
My head is telling me femur/hip joint should be replaced but have been told that this is not done in Scotland for mets patients!!
Don't think I'll sleep tonight.

All thoughts/suggestions welcome!!

Juls

MaineRottweilers 10-12-2016 05:20 PM

Re: Need input!
 
Juls, I'm so sorry. It should have been a better day. You have my prayers.

Juls 10-13-2016 06:43 AM

Re: Need input!
 
Hi Traci

Thanks for reply. Still don''t know what to think! At least all other parts ok!!

Julie

jra40 10-13-2016 11:29 AM

Re: Need input!
 
So so sorry to read your news Juls and that they blew up your special day with your daughter. I have no advice just prayers for you

Jessica

Juls 10-13-2016 02:10 PM

Re: Need input!
 
Thanks Jessica.

Did a bit of research today. 1st thing I read is that a pathological fracture is rarely an emergency. So don't know why the panic and rush!

Juls

Juls 10-18-2016 03:50 PM

Re: Need input!
 
Just an update.

At Ortho Consultant today. He told me I am not in any imminent danger of fracture and was not overly concerned. Yes there is an area that could be a tiny fracture line ( looks like tiny dots )but it is not in an area that is typical of femur fractures. so he recommends watch and wait!
He did offer preventative treatment of pin etc if I wanted to do this, but if it was him he would leave alone and monitor. On the Mirel score I barely make 1! To see him again in 12 weeks for x-ray etc.
The area that has tumour is lower down the femur shaft and it is sclerotic. It looks better than it did in April so treatment working!
Major panic by my Oncology team & stress for all.
The joys!!

Julie

Carol Ann 10-18-2016 04:55 PM

Re: Need input!
 
Well, that is certainly better, YAY!!

So sorry your team had to put you through so much stress!

Carol Ann

MaineRottweilers 10-18-2016 05:37 PM

Re: Need input!
 
Ah, Juls, I am so relieved for you but also annoyed as he'll that your MO team worked you over so and on such a special day. Onward!

Juls 10-19-2016 03:33 AM

Re: Need input!
 
Thanks Carol Ann & Tracy

It will be interesting to hear what my Oncology team have to say about this on Thursday!

Julie

Juls 10-21-2016 07:07 AM

Re: Need input!
 
Me again!!!

Hospital yesterday. No-one had much to say about "panic" scenario! Also I had to fill them in re Ortho Surgeon as report not in.
I told them MY decision was watch and wait.
Actually got to read Ct report (1st time in nearly 4 years)
Doctor offered rads if in pain. Said "no thank you" Not in pain and that I would discuss this and other options later when required.
Found out that I have a bit of pleural thickening at one lung. It has been seen before & in this Ct it's very slightly thicker. Never mentioned to me before. Told not to worry about it! So as you can imagine now concerned about it.
Any suggestions/comments welcome.

Trust is in short supply at the moment!

Juls


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