Starting Chemo March 2015

Jackbirdie

Special- no. I thought nothing of the kind. Nothing I wasn't thinking already myself. I'm still planning to sit down with MO a week from today to powwow. Some days I know I can do it. Other days I doubt I can. Either way, it's almost over now, and on to HT, and whatever joys that brings. In my particular case I'm getting twice the benefit from HT, so it does really make me wonder how much it matters.

I will give him an opportunity to explain, I will listen with an open mind. As open as I can crank it open right now. I have idly wondered that if I were one of the few who does not tolerate some kind of HT, I would be sorry I hadn't made myself finish chemo. If I am able to do the recommended 10 years (my guy really does seem to be a more is better kind of guy- but at least there is trial data for 10 yrs of Tamox) then the last chemo, or possibly a dose reduction, seems less critical

Trvler

No, Special. I feel lucky to have you.

I LOVE that Jack and Tutti have bonded. Maybe Jack needed someone, too!

eheinrich

The picture of Jack & Tutti made my day.

SpecialK

jackbirdie - I believe they are in trials for extended use of aromatase inhibitors beyond five years as well, for us menopausal women.  Some get extra mileage out of hormonal therapy by doing Tamoxifen for a few years then switching for five years of an AI drug if they are post-meno.  Honestly, I have been on both Femara and Arimidex with some bumps in the road, but doing well now that I found the generic manufacturer that causes the fewest SEs for me.  This is an individual thing - there is no one specific maker, and often HT requires some experimentation to find the best fit.  For those of us with strong receptor percentages, hormonal therapy is often the thing that packs the biggest punch for preventing recurrence.

I also want to say this - many women find that as they are exiting active treatment (chemo and rads) they are happy to be doing so, but seemingly inexplicably start to experience increased anxiety.  This is a completely normal thing but it often throws people for a loop - like, wait... I am done with this miserable experience, I should be happy!  It is due to worry about the future and being monitored less frequently and wondering how anyone will know if there is more cancer brewing, and what will be done to watch me going forward.  This is a pretty universal experience.  I was fortunate to participate in a study in Mindfulness Based Stress Reduction for breast cancer patients at the USF School of Nursing and Moffitt Cancer Center right after chemo.  It was a quantified study looking at cortisol (stress hormone) levels before, during, and after a 6-week class in meditation and yoga.  Learning, and really incorporating, the knowledge that you can't change the past, can't control the future, and must live in the moment is critical to not letting worry about the future take over and rob you of today's happiness.  It is easier said than done, but I think it is very important in learning how to live after this experience.  I have some materials I can point anyone to if you are interested.  I found the techniques to be invaluable - particularly with the amount of surgical intervention I have had.

Trvler

I would love to hear more about that, K. I am currently starting to take advantage of the Cancer Wellness center in my area. I am going to every stress reduction, meditation, etc, thing they offer.

SpecialK

Trvler - This course/study was based on Jon Kabat-Zinn's book Full Catastrophe Living.  Here is a link to the study itself below.  There are some MBSR materials online that I will link as well.

http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122

http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=683437&version=HealthProfessional

http://www.mindfullivingprograms.com/whatMBSR.php

It is hard to do while in the middle of chemo/rads, but I also found that I gained confidence in doing some things I felt could potentially be of benefit long term.  I changed the way I ate - actually, pretty drastically even though I ate well previously, the cosmetics I used, shampoo, cleaning products, exercise/fitness, etc., because it was something I could control in the face of so much that I could not.  I know there are people diagnosed with breast cancer that were already doing those things but it helped me feel better so I figured, why not?  I also attended the YMCA Livestrong program.  This is a 12- week program, free of charge at participating YMCA locations due to a grant from Livestrong.  I wish every Y had this, but they don't - you have to check with the ones in your area.  It is an exercise program designed specifically for cancer survivors of all types, and they will take any limitations, such as lymphedema precautions, into consideration when planning a program.  For participants the Y will also waive your initiation fee should you choose to join after the free 12 weeks is up.  You can attend any of the classes, use the pool. etc. during those 12 weeks, it is not limited to just the Livestrong classes.  You have a personal trainer, who has been trained by Livestrong, at your disposal, free of charge, during the 12 weeks to help you design an individual program for you.  If you live near an NCI center, and often some MO practices/centers, they may have free yoga, massage available fee for service, acupuncture fee for service, and the one near me has an art program also.  My MO's office (private) has nutrition counseling, yoga and massage available.

Edited to add:  Try not to get too annoyed at the celebrities (I call it celebri-cancer) with breast cancer who seem to breeze through all of this.  Remember that they make their living in the public eye, many of their statements are crafted by their publicists (who don't get paid unless that celebrity is working!), and any and all of their projects/jobs are underwritten by insurance.  It behooves them to appear fully recovered and feeling fine, even if they aren't, because that is what keeps them employed.  If the perception is that they are sick, or can't work, they will not be offered movies/plays, etc.  In the case of Rita Wilson, she was most likely under contract for the play she was appearing in - she could have potentially been sued for breach had she not returned in a timely fashion - her role in the play is part of what sold tickets!

wpmoon

special - thanks for those links, I'll check them out later. My final chemo is Monday and I'm definitely experiencing increasing anxiety about it. I'll still be going in for herceptin until less March, but my visits with my MO will be less frequent and when I asked about monitoring for recurrence it's just yearly mammograms. Hearing that caused both relief but also panic.

eheinrich

I totally understand the panic. I see my MO in 3 mos for blood work - they monitor cancer markers in your blood. It's not 100% accurate but if these spike then they scan you. Otherwise yearly mamo. I guess they also do a hormone panel & once Tamox pops me info menopause (ugh) then she switches folks to a HT drug for post-menopausal women. Is anyone else doing that? One of my big fears about reconstruction is what if the implant then hides something? Any thoughts from folks doing reconstruction?

SpecialK

wpmoon - exactly!  You should find the Herceptin only infusions to be so much easier.  I had the Big D throughout chemo - it continued on H only until I started using a probiotic.  I also had some mild headaches towards the end of H only infusions, but they stopped when I was done, and were handled with OTC pain relief.  I received Herceptin over 90 mins when combined with chemo, and I had little to no bone/joint pain during that time - I was lucky.  My first H only was run over 30 mins (the dosing and infusion direction state it can be run between 30-90 mins) and OMG, I was in such pain for days.  Could not sleep for more than 15 minutes in any one position.  Asked to have the time extended back to 90 minutes on the next infusion - no pain.  This is consistent with many other members on BCO, it is anecdotal, but worth doing if you experience any discomfort.  Some people get push back from MO staff because you are there longer, but be insistent.  Many experience this anxiety after treatment when their docs tell them they won't do scans, or tumor markers, or whatever - the question is how will you be watched?  Their answer is usually we scan or investigate if you have symptoms - which seems a bit late, no?  I often tell people who are looking for a MO to ask how you will be monitored after treatment, because this is so important to so many and nobody thinks to ask about it because they are so focused on the immediate treatment and diagnosis.  I am fortunate that my MO does scan periodically and does do tumor markers prior to every appt (initially every 3 months, now every 6) and when I complained about some acute hip pain six months ago did several MRIs immediately.  This was the first time I have been really frightened about progression, but it turned out to be ortho stuff, a bunch of it, that requires PT, but I will take it!

SpecialK

eheinrich - Tamoxifen should not cause menopause.  It actually allows free circulation of estrogen - that is why it is prescribed to pre-menopausal women who benefit from the positives that estrogen provide - stronger bones and heart.  It is a hormone blocker in that it occupies the space on the ER receptors so they can't be fueled by estrogen.  I would imagine that your MO is doing a hormone panel to double check on your menopausal status.  Aromatase inhibitor drugs - Femara (letrozole), Arimidex (anastrazole) and Aromasin (exemestane), are prescribed to post-meno women because it is assumed that their estrogen is no longer being produced by their ovaries, and so it prevents the conversion of androgens to estrogen by suppression of the enzyme aromatase.  Implant reconstruction can hide a chest wall tumor, or unremoved nodal involvement, but generally an implant doesn't mask local recurrence in what used to be the breast.  A lump has no tissue to hide in and will appear visibly because you have skin over pectoral over implant.  Autologous recon is another issue and I am not sure if mammography or US is routinely used in that case.

Jackbirdie

special- this info is so very good, albeit overwhelming.

Speaking of ER positivity, my original path report didn't give a number. Only that it was strongly positive. I asked my doc and we finally found the actual number on my oncotype dx. It is 85%. I guess I don't really understand how it works, but it seems higher would be better in terms of HT effectiveness.

As far as menopause, I'm 58, no period for several years, but the hair follicle and estradiol showed levels were still too high still to make an AI effective at this time. So he is suggesting something along the lines of tamoxifen for 5 then an AI for 5 more, assuming/hoping more data is available somewhere along the TC continuum.

If I was younger I might get some benefit from ovary removal but I'm so close in sure it will be viewed an unnecessary surgery. And based on my recent past, I would only go under the knife for a really good reason and big benefit.

Special, given what I've shared is there any questions you would suggest I ask my MO about the whole HT subject?

And thanks very much for the helpful links. I think I need to get that book. Your summary of the panic approaching when not being monitored as closely is spot on, and was comforting to hear you analyze it and give real solutions.

You really are a ROCK STAR!

SueH58

Katy, that Tutti is so cute and cuddly I can hardly stand it. Can you send her to me? There are other nice kittens out your way...

SpecialK

jackbirdie - aw thanks!  Here is the deal with how ER positivity is measured.  They take a slide with a slice of either biopsy core or removed surgical specimen.  They count 100 cells, then they count how many of them have estrogen receptors.  In your case 85 of your 100 had receptors, so 85% ER+.  Keep in mind that this is a sample and that tumors are not homogenous, i.e. - a different slice may show more, or less, cells with estrogen receptors.  What I would ask your MO is what their view is on testing for Tamoxifen metabolization.  There is a test that looks at the uptake pathway that Tamoxifen utilizes - I will link some info for you - this same pathway is used by some other drugs also.  It is important that you be a good metabolizer of Tamoxifen if it is what will be used to control whether estrogen fuels the cell receptors since it blocks at the receptor rather than suppresses body-wide, like AI drugs do.  If you do metabolize the drug well, it is an excellent plan to use Tamoxifen for five and then use an AI for five - double teaming for 10 years of protection.  Some MO think this test is unreliable or controversial, it is not recommended by the governing bodies that formulate treatment guidelines.  However, if I switch to Tamoxifen you bet I will be having it done.  The second link is an insurance link but contains good info.

http://www.ncbi.nlm.nih.gov/books/NBK247013/

http://www.bcbsks.com/customerservice/Providers/MedicalPolicies/policies/policies/GeneticTesting_TamoxifenTreatment_2013-09-25.pdf

http://www.medscape.com/viewarticle/776933

 

molly1976

Katy, mine was 95% ER+ and my MO did say a higher number is better, i.e. more respondent to hormone therapy than a lower percentage.

eheinrich

Thanks SK, I guess I misunderstood what she was saying. It didn't really make sense to me since folks are generally on Tamox for 5-10 years. Prior to chemo I was not in menopause at all so I assume this won't be an issue.

Started Tamox yesterday

Italychick

ok back from MUGA, ejection fraction went from 57 to 65, so it moved in a positive direction, thank goodness!

I also met with my primary care physician, and he said at a minimum I should get a mammogram every six months for the next year and a half, then go to annual testing. I'm sure that is because ER negatives tend to recur early. I asked about an annual MRI and he said if I want, but insurance may not approve it. But he said they will be watching my mammograms closely given my breast cancer diagnosis. He told me go live my life, don't sit in a puddle of worry. He said my stats and margins are great, and he would not do a prophylactic mastectomy. He said the most important component now of treatment is surveillance to catch anything else early.

I can't do radiation because of being radiated as a child, so that option isn't open to me. That is why I was considering the mastectomy. I couldn't walk when I was a child because of a growth that they radiated in my upper spinal area. I found out this information recently from my mom, and also that my dad is not my biological father. They hid that from me for 49 years! I vaguely remember not being able to walk, but they told me I had a pinched nerve. And I can't find any records because it was done at a public hospital in Chicago, and they don't remember where.

Nothing like a cancer diagnosis to drag the skeletons out of the closet.

Jackbirdie

Geez Theresa!

Skeletons indeed. But most important, so glad your heart function is good. Improving even. We all know why. You take pretty good care of it. That bike riding!

Life is very curious.

Special, I read it all. So much better understanding now. I take it from the overall non support of the national oncological big shots, (yet) insurance probably does not pay for the endocrine/Tamox efficiency genetic CYP2D6 testing? And unless it's like the company that offers the Oncotype dx cheaply, for the sake of gathering info, I will be shut out of that, being on permanent disability. I do have a Medicare based plan with BC/BS and may call them just to see what they say. I'd like to hear that BEFORE I hand the big powwow next week with MO. It seems to be regarded as nothingore than experimental. Despite the Adutch study.

It is all very interesting albeit a bit over my head. I just wish it wasn't SO PERSONAL and be what seems without exaggeration a real life or death matter for many.

And yet, unless you ask the hard questions, you take a script home from the doc and just take it.

Also interesting that they seem to use Tamox in metastatic cases even if not necessarily ER+ or did I misinterpret that?

Jackbirdie

Molly- that certainly makes sense to me and is what Ihave always believed.

With this new (to me) info from SpecialK I am now wondering if lower estrogen positivity goes hand in hand with poor or intermediate metabolizer of the drug.

Or if there is no relation.

As usual, the more I know, the more I realize I don't know. Ugh.

molly1976

Hey - I just went to create a facebook group for us to use and it wants me to add at least one person in order to create the group. Anyone want to post a link to their facebook page so we can get started? I think I will have to add you as a friend first.

Jackbirdie

Molly I just PMd you with my name so you can send a friend request.

In case anybody is wondering I'm bored out of my mind waiting for weekly blood work to come back.

Not as cute as Tutti. I know.

molly1976

Hmmm I am having trouble figuring out how to add you guys based on a name search. Let's try this - here is my profile:

https://www.facebook.com/molly.mcclure.100

See if you can add me as a friend. I think once the group is established I can just post a link and you can join the group without having me as a facebook friend.

Jackbirdie

baby whites lowest ever at .8

eheinrich

Molly, I sent you a friend request.

Wow Theresa that is a lot of new info - how are you doing w/ processing it?

molly1976

Here we go! Group link: https://www.facebook.com/groups/850254498401950/

I made it secret so none of the posts will be visible to anyone not in the group.

Jackbirdie

done. I'm pending

TerryMarie

Hi everyone, I haven't posted in a while, mainly because I whine a lot ! Its been 3 weeks since the final treatment, I'm over most of the side effects I hope. I had a terrible reaction on my face and hands from the docetaxel , blotchy, beet red and my skin was peeling around my eyes and the sides of my hands strangely enough are still peeling also. The diarrhea subsided, the bone pain was alleviated again by taking steroids for 3 extra days (really works). Now what im dealing with is extreme fatigue with a complete lack of stamina, even doing the easiest chores or walking the shortest distance leave me feeling like I absolutely have to sit down. I hope this goes away, its kind of scary to me that I can't do anything!

But the side effects do wane and things do start to look a lot better once you finish.

Jackbirdie

any day now TM! I think Special said its more like six weeks PFC (does that stand for post- fucking chemo?) before really noticeable imorovements start coming. Hang tough. We are still here for you

molly1976

I am 2 weeks out now and I feel like I noticed the fatigue more afterward than I did during - but that might be because I had unrealistic expectations that I would start to feel better instantly. I do think I'm noticing small improvements day by day, though. My nose is finally close to normal today after being dry and bloody for three entire months.

Trvler

Wow, Theresa. That's a lot to digest.

BBwithBC45

I'm 3 weeks PFC and yes, my nose is back to normal, no more bloody, crusty. But the nausea (milder version) and the tiredness are still with me.