CYP2D6 ability to metabolize tamoxifen and recurrence

Hi Solfeo:

I actually did not see your post until after I posted, because it took me a while to write it. I agree with you that: "None of us can say for sure what it all means, including the scientists at this point in time."

BarredOwl

"None of us can say for sure what it all means, including the scientists at this point in time"

Yup. Thus the aggravation. My hope is that as the BC community becomes more educated and more vocal, dare I say militant, this will change. Soon.

Soooo.... seems like I might have a real world problem in the context of this thread. I have been having persistent shoulder pain from exercise. That is very common after mastectomy, so my MO sent me to Sports Medicine to investigate. Upon clinical evaluation it seemed to be a textbook case of either a rotator cuff injury or one other condition the orthopedist named but I can't remember.

Had the usual x-rays. Uh oh, something needed further investigation, so more x-rays. Uh oh x10, bone overgrowth on clavicle looks suspicious, need an MRI to rule out bony metastasis. Uh oh to the infinity. Unfortunately I have to wait at least a week for insurance approval to get an appointment.

If this turns out for the worst it's clear tamoxifen didn't work for me, and I just happen to be a 2D6 IM who was obese when I began treatment. First brilliant medical professional to tell me there is definitely no connection (they dismissed my concerns about incessant breast itching for five full years while misdiagnosing my cancer to begin with), better be prepared to defend himself.

No it's not a scientific certainty but to reject even the possibility will reveal very small minds.

Please keep us posted. My husband has two bone spurs right on his shoulders, so that is very common and hurts badly. I'm a little depressed today because i tried to share on a FB group what I was learning through this thread and some other more clinical threads and a huge group of women started calling me a fear mongerer and to stop being Dr. Google... They just will blindly follow their docs, and refuse to dig at all. sigh.

solfeo. That is just crazy. I hate bc!. I will be praying for you.

The plot sickens. He told me my clavicle was thicker than it should be in one spot and asked me if I had ever broken it. He said it could be cancer given my history, or it could be that my bone just grew that way. Then I heard him say something to the MA about ruling out bony metastasis, which I believe would indicate an overgrowth rather than deterioration of the bone. However, on the MRI order he wrote: "Right shoulder erosive changes/clavicle," which could be quite a bit more concerning. Why on earth would he tell me one thing then write almost the opposite on the order? I feel like he was trying to keep the truth from me for some reason and maybe thought I wouldn't read it (his writing is so messy I barely could). I wish I would have asked to see the x-ray for myself but I was too nervous to think of it.

I have asked my MO to order the MRI instead because if I am going to get bad news I would rather it come from him in the same conversation where we can talk about treatment. The orthopedist was way too cavalier in his delivery of the news, and I don't even think he told me the whole story.

Through all the other recent stressors I have managed to hang on to my positive attitude and calm, but this one is a challenge.

Solfeo, when do you see the MO? The waiting part is the hardest, I hope it's over soon... and it's happy news.

By the way, I've been on Tamoxifen for 5 days and my neck and knees are now in pain... like my joints are acting up. Do you think it's too soon for symptoms of Tamox to show up? Other than the joint issue that started just today, I've had no nausea or anything else.

Still waiting on my Kailos report as well.

Solfeo, we are all thinking of you. The waiting can be almost intolerable. Fingers crossed.

Lisey ~ Those stupid FB women like to live in their make believe world where all cancers can be staved off by rubbing an organic lucky bunny foot and shoving pesticide free kale up their arses. You tried to educate them and shocked them into the real world. You did nothing wrong! Ignorance, fear, weakness.......no excuses for cruelty. Stay away from there! Stick with us here

Solfeo ~ Damn girl! Big (((hug))) The ortho guy you saw typically treats sports injuries? He might not fully understand what he is seeing. The MRI is necessary to get a better look. It also sounds like he is being cautious and wanting to cover his butt (and your shoulder) just in case of mets. Cautious is good.

Does your MO have an Orthopedic Oncologist he can refer you to? Smart move to have the MO order the MRI as you would probably have to follow up with him anyway. You like your MO and communicate well - I'd tell the the other guy to piss off too

As for what is actually going on with your clavicle? It could be anything. Bones do a lot of funky stuff. Typically, pain from bone mets builds up slowly over time, first as an annoyance and then becoming unbearable. Are you having pain anywhere else - spine, ribs, hips? I have mets and arthritis in multiple areas. They both can cause an overgrowth of bony material as the body tries to correct damage. Radiation therapy also causes bone thickening. Zometa infusions can cause it too.

So....as the gal with the most mets here on this thread, my advice is to not panic until it is time to panic. You can go over and over different scenarios, but until you have the results from the MRI, you really can't guess at anything. What you do now, while waiting, won't change a thing. Save your energy for when you find out how F'd or not F'd you are. It sucks. I know, I really know. I'm giving myself the same pep talk while waiting for the results of my gazillion tests yesterday. Praying for some positive news for you soon.

Solfeo,

I'm not going to tell you not to worry, because that's like telling you not to think of a pink elephant, but the odds really ARE in your favor. Your kind of cancer just doesn't move that fast. And all the good things you've been doing to hedge your bets---I just don't see it happening (and ask my husband, I'm pretty much right about everything)

I know the next few days are going to seem like forever, but I hope your MO is able to get back to you with good news as soon as possible after the MRI. Glad you re-upped those anti-anxiety meds recently!

(I've been told the SOFT study and the ATAC study are being criticized so their outcomes may not be as great as they say) Solfeo, look at the stats of the SOFT trial... look at your numbers... the odds of you having a reoccurance this quickly just doesn't really happen... you are node negative, Grade 1, who has been taking Tamoxifen (granted you are an IM).. but after reading the SOFT clinical trial, I've come to the conclusion that Tamoxifen works for people no matter their metabolism rate. My reasoning is this... if 10% of most Americans are PMs, then 10% of node negative ER+/PR+/HER2- women would be PMs as well... The results of how successful Tamoxifen is in the node negative group was very high for the first 5 years.. like 98.6% no Distance Re-Occurence, YOU are in this category... That SOFT study was a super huge relief for me to read... You should check it out.

Good to know Live, I'm waiting on my results as well.

Does Kailos have a feature like YouScript where you can check drug interactions? I am finding YouScript to be useful but I hate giving Genelex my money for a subscription after the billing hassle.

I guess I'll keep the YouScript for a year then. I haven't found anything else like it that looks at both gene-drug and drug-drug interactions all in one place and it has saved me hours of googling. So I get my money's worth if anyone wants me to check anything for them when they get their Kailos results hit me up. I know Sassy has made that offer to others before as well, including me.

I read all of the studies Lisey. ATAC was one of the studies criticized by Mayo Clinic and others for genotyping and other errors. No treatment works for everyone in any group and even if the statistical risk is only 1% some people will be in that small minority. We have plenty of women around here who were low risk, node negative and still recurred. Even some with negative nodes who were Stage IV out of the gate. If you are like most of us, you probably didn't know that was even possible before. Also some with low Oncotype scores like me, which gave me a 9% chance of recurrence with tamoxifen, assuming it works. Tamoxifen actually fails from 30-50% of the time (I have seen both numbers), however, for some women with early stage node-negative disease surgery alone is curative and they never would have recurred even without endocrine therapy, but you can't identify most those women in advance with any reliability, and most of them are going to take antihormonals just in case. A poor metabolizer under those circumstances may never know tamoxifen wasn't effective because they wouldn't have recurred regardless. The first five years isn't necessarily the most important time period anyway, although that's not what we're talking about in my case. ER+ cancer is more prone to late recurrence because it lies dormant until conditions are just right to bring it alive. It can and does come back even 20 years later.

It wouldn't be the usual scenario for someone with my stats to have a recurrence so soon, but it does happen and there are risk factors. The most concerning is the large tumor size and the length of time my cancer was misdiagnosed (at least five years). But to be truthful I think if it has happened it was probably there from the beginning, just not visible on scans yet. Some of the problems I'm having were reported to the BS as early as January, which was only 3 months after the surgery. She dismissed my concerns without consideration and scolded me for bringing them up.

I'm not focusing on the negative; I'm still trying to stay as neutral as possible until I know. I just don't want anyone to be misled into believing "Tamoxifen works for people no matter their metabolism rate," in the context of this thread. That has not been proven. Or thinking that low-risk women don't recur. They do.

Solfeo. Genelex is separating the genelex and Youscript into two incorporated companies. They then will be licensing the YouScript to other companies for use.

Not reading anything technical ladies. In a phase.

Lisey I know I keep bugging you about where that error thingy may be. BUT it is important to me. Please, give it a try to find it.

Shep do I need to make that phonecall?