Starting Chemo September 2015; join us!

exercise_guru

My doctor wrote this down

Vitamin E 800 units/day

Vitamin B6 200 mg /day

Calcium 600-750 mg 2x /day

Vitamin D 2000 units/day

yes on Fish oil and magnesium but we didn't pick an amount both are good for nerves.

The claritin is totally unscientific desperation. I had such strong inflamation from Arimidex I chose to take 24 hour claritin with my Femara. I have a friend with Lupus and she takes Claritin because I guess histimine can be very inflamatory. here is a thread where other women are taking it.

AI and Claritin

if I can get the willpower together I am going to try some fairly extreme diet changes to see if I can somehow pull the inflammation out of my hands. if anyone knows anything about cutting inflammation and diet or supplements please pm me.

Minnesota_LisaFR

Hi all! Glad to read all your updates.

I'm still on an epic delay starting radiation caused by continuing impact of that post-surgical internal bleed. I'm FINALLY having surgery tomorrow that surgeon hopes will correct enough to move me toward radiation. I will most assuredly not start within the 12 week optimal window between surgery and radiation, which is depressing.

Two positive notes:

1) Because I've been so delayed in beginning radiation, MO started me on arimidex one week ago. Like most of you, I was leery of the side effects. But my SEs have been almost non-existent: only brief, minor hot flashes briefly at night. I know many horrid AI SEs (osteoporosis!) are cumulative, but I've been relieved not to have any after one week.

2) My hair, although behind most of yours, is growing nicely. Although my boy-length hair gets rude stares on occasion, at least I don't look so chemo-y any more. I had a scraggly nape and husband clipped and then shave it to neaten it up today.

I'm holding each of you in my heart - we continue to endure

Minnesota_LisaFR

Southern - LOVE!! Thank you for sharing - you give me hope

Shopgal2

Lisa so sorry about your delay in rads. That truely sucks.

Southern you look beautiful.

tkemp67

Southern: How are you doing? Your hair looks great! I am so happy to have hair again, mine is really gray and curly. But it could be purple and I wouldn't care lol....did yours come in dark or did you dye it? I have been debating about coloring it.

Lisa: Sorry about the delay!

El Tigre- How is the joint pain? I started Tomaxifen this week. And I asked ON about vitamins and supplements and he basically don't recommend anything, which I find strange. I have taken vit D and B12 for years. And when they did the blood work after last chemo my Vit D was low so he prescribed once a week 40,000 mg vit D. When they checked it last week it was lower than b4 I started taking the prescription. My white blood count was up to 3.6. And most of the blood work was normal. which is good. I am still tired most of the time. Didn't you say your doctor recommended some different vitamins and supplements? Except our age, our diagnosis was a lot alike....and the treatment was also pretty much the same. I feel like I need to do more to prevent this from returning and I am looking for answers. My BCS is still out, she's having twins not sure when she will be back. I hope you are doing well.

El_Tigre

HI,

Yeah they tested by vit D before my surgery and it was 29 and they tested it about 2 weeks ago and it's 42. That with taking 4,000 IU per day. My naturopath prefers it higher (over 50) so I started taking 5,000 IU per day until i see him next on 5/20.

Joint pain for me sucks. Hopefully you won't have as much. Acupuncture and black cherry extract pills along with frankincense have helped reduce it, along with exercise.

As for prevention My naturopath recommended me taking green tea extract, COQ10 & melatonin. The melatonin helps tamoxifen do a better job.

On my own I take Calcium, Garlic, Fish oil, zinc, and a gummie multi-vit. My naturopath didn't want to over do the supplements with me but I kept taking these anyways. This is my 3rd naturopath and they all seem to do something different.

I wouldn't worry about supplements make sure you are getting enough Vit D and Calcium.

They are also testing my hormone levels, when i am able to we are going to switch me from Tamoxifen to AI's. But we'll see i get my estrodial tested tomorrow.

WOW twins.. no thanks LOL

tkemp67

What's Al's? Why is he switching you? They checked my hormone level b4 prescribing Tomaxifen.

I have twin girls, but they are 28 now!!! and have children of their own.

cajunqueen15

tkemp, I love having twins too!

Southern, you look amazing. Xo

Is anyone taking Prolia? I have early osteopenia. I'm going to do it, but not crazy about more SEs. I am medicated to the max, yikes!!!

ThinkingPositive

cajunqueen15....my MO said I could switch if I wanted to. Does your insurance cover it? When I looked into it the cost was quite expensive. Does anyone know if there is a generic?

cajunqueen15

thinking - that is the million dollar question. Doctor is trying to get it authorized. I won't start it until July after dental work.

ThinkingPositive

even if I could get it authorized I have a $3000 deductible and then 50% coinsurance up to $6400 so I would be paying for a lot of it myself. Right now I pay $170 a month for the actonel. The prices are just crazy I can't imagine how anyone can afford it once you retire. Is there a reason why you're waiting until after your dental work does it do something if you're having dental work? I know I need probably a root canal and I'm hesitant about going to the dentist as I have a fear but I guess it'sbetter to go sooner than wait.

cajunqueen15

That is crazy. I i have an HMO, so we shall see.

I have a mercury filling that needs to be removed. I want to make sure there are no underlying issues since you should have a tooth extracted on Prolia.

Shelly52

My ins authorized prolia. I have osteopenia, too. 😕 Not sure when my MO wants to start it. I see her next week for the 4 month check. I've been doing some reading about it and am a bit worried about side effects. It's a pretty new drug. It was my MO's first suggestion however, after the dexa scan results came back. She did mention a dental side effect - low percentage but if you have dental issues, you might want to get more info or consider an alternative. Did you get all metal fillings removed? I have not done that. Hmmm

Weight bearing exercise is our best bet it seems. Any suggestions on this besides walking/running?

Take care

ThinkingPositive

I think the tooth I have the issue with has a Mercury filling. I only think I may need a root canal because periodically I get a sensation in the tooth. I need to go instead of being such a baby about it. Been through worse with bc. Right

El_Tigre

Tkemp - AI's:

Aromatase inhibitors stop the production of estrogen in postmenopausal women. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.

AI's are supposed to be more effective (around 2-4% more effective to prevent recurrence) than Tamoxifen but they are for post menopausal women. Since I'm 37 gotta get those hormones down with lupron or get my ovaries out - ouch!

twiggyOR

Southern Charm I don't use deodorant anymore either. I couldn't use it for a long time after surgery in February. Then I looked for something less toxic but didn't find anything I liked. I eventually gave up and now I don't have any issue going without. Hopefully chemo didn't kill my sense of smell. 😀

cajunqueen15

I hate dentist! But I went and made the earliest available appt for the filling. They will probably replace it, but it's hard to see if there are additional problems on an xray with the metal. Dentist says risk is minimal and they can grind teeth and do root canals to prevent extraction, but to be aware.

I have no idea how I will find the time to work full time, care 4 three little ones with a husband who works 60 hour weeks. Does chasing and picking up preschoolers and a toddler count?

Love to you all!!!

cajunqueen15

also not crazy about Prolia. Do these meds even work? Some info seems to indicate they make your bones more brittle down the road.?!?

exercise_guru

I think the Prolia and really even the AI stuff is a bit scary for women under 50. I am debating switching Tamoxifen and taking my chances because the long term SE of AI ( heart, bones, cholesterol) really concern me. The TEXTA/SOFT study are not long term. They have very little information on the long term effects. I have to think that surely this oopherctomy,hysterectomy ought to provide some protection. Its a tough deal. Breast Cancer Sucks

ThinkingPositive

can't agree with you more!!!

cajunqueen15

I agree, but I think my risk of mets is so high, I will roll the dice with my heart, bones, etc. There is no real "win" in all this.

Cinque

When I was talking to friend of mine I think she summed it up quite nicely....we do get choices they just are shit choices....

On the plus side Im bouncing back quicker than I thought I would. I have side effects annoying yes but manageable. I go to the gym...little running on the treadmill, some weights lots of lunges and squats and a lovely stretch class. I definately feel better the days I exercise.

Getting my little gray curls coloured tonight its not my pre chemo hair but a step in the right direction. What a horrible year we've endured. This time last year I was in Italy oblivious to all that was ahead of me....time to start planning fun stuff again. Ive never seen snow......

tkemp67

Anyone - My doctor is offering me a trial study the Medicine is called Everolimus AFINITOR^® (everolimus) Tablets is indicated for the treatment of postmenopausal women with advanced hormone receptor-positive, HER2-negative breast cancer (advanced HR+ BC) in combination with exemestane. I will still be on Tomaxifen. Not sure what to think. Its suppose to block growth of tumors. But it has a list of side effects a mile long. Another decision I have to make!

Has anyone heard of Everolimus?

El_Tigre

Cajun might be on the same meds.

cajunqueen15

hi tkemp. I'm in the e3 study. I am taking either everolimus or a placebo and Arimidex. When I took my second dose of the medication I had also bumped up the time I was taking my Arimidex due 2 insomnia and I had a horrible reaction and ended in the ER. I will never know whether it was the study medicine the Arimidex or the timing. That said I started the trial again and have had no problems since with different spacing for the medications. I had a long conversation with my oncologist about this trial. And because I'm now in full menopause I will never really know whether some of my symptoms are menopause the Arimidex or the everolimus or whether I'm getting the placebo and some of it May be in my head. I was worried about being immune compromised for another year. I was also worried about potential lung problems. My doctor said that if problems developed they are almost always reversible. But of course that's no consolation if you're in the hospital. The most common side effects are mouth sores raised blood sugar and raised cholesterol. I can't tell you if the latter two have occurred because I've only had my blood drawn once.

I can tell you that my lips are extremely dry to the point that no amount of moisture or drinking water makes any difference. I also have a slight hand Tremor and I don't know what that's from. I developed a small red rash on my non-cancer boob and that has gone away. And I'm extremely fatigued but then again I've had pretty much every treatment possible and I don't know how I could not be.

I decided early on I was going to throw the kitchen sink at this cancer because it is so aggressive and I believe the risk of mets is so very high. So I decided I would roll the dice with respect to all the side effects that I will be enduring for the rest of my life as a result. I told my oncologist I don't expect to live to see 70 or 80 either due to the cancer or as a result of all this crap I've done to my body but either way I just want to see my kids finish High School and move into their adult lives. I want him to do whatever he can to make that happen and I'll deal with the rest.

cajunqueen15

I had a funny conversation with my doctor about this trial. I asked him if it was his mother or sister would he recommend they do the trial? He asked me what my primary objective was in all of this. I said to raise my children. I said my risk of Mets is so high I need to do everything possible. He said your risk is not that high twenty-five maybe thirty percent. I said no it's at least 38% because I was diagnosed postpartum. he said according to the traditional modeling no more than 30%. I said I believe it is 70 to 80%. He asked me why I thought that and I said it's just a feeling just like how I knew that I had invasive cancer before I was diagnosed even though there was no lump. He said it is definitely not that high. I said, well if you were a patient who believed their risk to be that high then what would you do? He just laughed and said then I would go back on the trial. I like my oncologist.

cajunqueen15

one last thing... Tkemp if you want more info on this trial than you ever thought possible, PM me with an email address and I'll forward you a bunch of e-mails, documents, and answered questions I had of my team.

Shelly52

Hello! Had my 4 month check today. All good. Discussed Prolia injection. I asked if there was anything I could be doing to try to head off the need for the prolia shot or if she felt I should have it regardless. She immediately said I should have it regardless. She highly recommended it. I am 52 and have some osteopenia, BTW. She said breast cancer likes to spread to the bones and cited a recent study that showed that prolia was effective in reducing such spread by 20%. She likened it to adding a protection to the bones that I could not get through diet and exercise.

She also mentioned a new test that can be done on your tumor cells at the 5 year point which will show whether or not pt should continue on the estrogen blocker for another 5 years. Interesting.

She also suggested I try Glucosamine chondroitin (sp?) to ease side effects from letrozole. She said she has 20 or so patients right now who are having positive results - reduced bone and joint aches. I bought some on my way home. 😊

Weirdly, it was really good to see her (my MO). I found that i really missed her and the biweekly talks we had during chemo. Anyone else feel like this? I feel lucky to have such trust and confidence in my doc. My next appt is in 4 months.

cajunqueen15

shelly, I get it. But I can't miss my MO. I've already emailed and responded to him 5 times today, lol. And I and I see him once a month. I think of the MO as somewhat of a security blanket for cancer patients.

I've been asking my doctor how I can tell whether my cancer is luminal B or basal like non triple negative. According to him basal like cancers are rarely estrogen positive enriched but he said they can test my sample. He is going to try to get my insurance to cover it or ask for them to do it pro bono.

I was out with some friends after work at happy hour and I asked him if I could have an occasional glass of white wine. He said not a good idea. :-( This is not really a big deal but I can't say I don't miss a lot of my former life.

tessu

Hi! I've been reading almost every day and enjoy hearing about how everybody is doing.

cajun, did your MO say no alcohol ever again, ever? I used to drink rarely, and this spring have indulged in a glass of shampagne for Mother's Day and a glass of wine a couple times with dinner. The oncology clinic here advised "moderation" not abstinence --- my liver tests have remained normal. Is your total alcohol ban because of the research trial you're in?

Re: Prolia --- My docs said hold off on any bone meds, because although I already had osteopenia before the bc, it hadn't gotten any worse through chemo. Also the oncologist said no Prolia during Herceptin --- several Finnish patients taking both at the same time had gotten "bad long-lasting skin reations", so I'd have to wait until several months after treatment for the Herceptin to wash out (so next spring). Something about both drugs being antibodies and possibly interacting was her explanation. Otherwise that drug sounds great --- I'll try anything that might decrease recurrance risk!

I've been on Arimidex since the last week of January (so about 4 months) and was congratulating myself that finally there's a bc treatment that doesn't give me bad side effects, just stiffness in the morning or if I sit in one place for too long. But this past week I've been getting increasing muscle soreness pretty much all over, not sure why, as I haven't done any unusual exercise/work. Have in fact gotten lazy --- no exercise bike for over a week (but partly because of an out-of-town trip). Anyone else here getting bad muscle pains from AIs? My next doc encounter isn't until the end of June, so I'll have to wait till then to ask.

Wishing all of you a happy weekend