Starting Chemo March 2015

molly1976

Hi guys, if you want to be in the facebook group message me with your email address!

greenae

Hi all

Just wrote a post and lost it. Darn fone! Just wanted to check in and say hi! I am back in the swing of things at work and the gym, trying to regain strength and energy and ditch this neuropathy. I got my first trim this weekend, and apparently no longer have much brown hair. I am gonna lose the wigs and go for the Jaime Lee for a bit.

LittleBlue, so glad to hear you had fat necosis. I have some lumps and bumps under my mx scars that scare me a bit. I will be addressing them with my docs at my first follo up in 2 weeks. Yikes.

Katy, I hope you are feeling better. You have pulled all of us thru So Much. I want to pull you back Up. T, I hope your tooth feels better soon.

I am sorry for all the rads SEs...I can't wait til all these SEs can be distant memories for everyone.

I wish I could keep up with you all, I read and think about all of us everyday. F BC!

Hugs!

Arlene

New Do...gotta stock up on jangly earrings. Lol

neverthought

I was wondering if vitamin D helps with the rough spots I have which I think are keratosis. MO and BS don't seem to be concerned but there are 2 on my surgery side and 1 on my remaining boob so I can't help but worry.

Have been reading everyone's posts every few days to keep up and sorry to hear of all UTIs, YIs, rads burn and fill pain. I don't know how everyone keeps their sense of humor, but very grateful that everyone shares ups and downs and pictures. We are having a spider invasion here the past few weeks, which I don't mind except I keep running into webs. I don't know if I qualify for a black belt in karate, just grateful if no-one sees me swatting at invisible invaders and thinks I'm losing my marbles.

I know I don't have anything to complain about but seems like I am suddenly getting more tired and overwhelmed. Maybe just having to do everything on my own is getting to me. Had to get a crown this past week and temporary one makes me nervous, though my dentist is a sweetheart and said I could call him anytime if it comes off or breaks. I feel like such a baby but I am tired and feeling guilty as seems everyone around me has major problems of all sorts, more so than I am.

littleblueflowers

Arlene, looking GOOD! Dang I hope my grey turns into your silver!

SueH58

Arlene, you look gorgeous!!!

So, I know that rad fatigue isn't supposed to settle in until at least week 3, but I am bushed. I know perhaps it's because of the upcoming wedding, but shoot I'm drained. Anyone else notice the fatigue so early???

Jackbirdie

Arlene- you are so rocking the JLC look!!! Yes to more dangly earrings!

Diane- football and your son sound like a nice day. Try to munch on little bits at a time. Even I, with no problem maintaining my weight, have a harder time eating when my stomach gets really empty.

Neverthought, there have been some lunar occurrences lately which could account for all of us who are feeling a bit of the blues. (And a full eclipse ofthe moon tonight!) I am plowing through alone too, and sometimes it's a bit overwhelming. But I'm not really ever alone, because of all if you here.

Sue- I wouldn't be surprised at all at fatigue. You just finished chemo, and I'm sure rads can cause fatigue before the 3 week mark. It's all an average calculation. I'm sure some people experience it much sooner. Just having that daily appointment! And a wedding coming up! Try to listen to your body and give it what it wants. Unless, like mine did yesterday, when it demanded an entire bottle of red wine, followed by pumpkin shaped petit fours, in which case you should try to wrest back control. I don't think that was quite a proper sentence, punctuation-wise, but I'm sure you get my drift.

Meme117

Arlene your hair looks great, very stylish!!

Neverthough nice to see ya I'm glad you're not having issues. Sorry I have no idea about the rough spots.

Thanks Theresa, Special K if you have any info or leads to herceptin info I'd appreciate it. Looking for how it affects the heart and when is necessary to stop treatment.

littleblueflowers

Hey, where's my pumpkin petit four??? 😀

Sue, I was bushes the first two weeks of rads, then have improved to 90% or so of my usual obnoxious self by week 5. You are totally normal. Remember, Hester the proton canon is sucking life, but she wants to help...

Jackbirdie

Jen- here, and tell Hester to help herself too! I'm sure those cannons require a lot of energy!!!

Trvler

I was just reading up on magnesium because I took two last night instead of my usual one and I slept much better. The study I read said it doesn't improve sleep quality but definitely had a notable impact on hot flashes, cutting them I think around 40%. It cut both number and severity. I have to believe having fewer hot flashes helps with sleep quality. Regardless, it also said it impacts seratonin (sp?) and mentioned being helpful with depression. I am going to try taking 2 again and see how I do.

ksusan

Arlene, look at you!

Sue, I was fatigued earlier than week 3, probably because of residual chemo fatigue. I actually had less fatigue as radiation progressed.

BBwithBC45

Arlene, very cute do!

I would gladly share my appetite with whoever needs it; I seem to have too much of it. I have munchies, want to eat often. Partly it could be because my nausea seems to go away while I'm eating, but then it comes back.

SpecialK

meme - generally they will stop treatment with Herceptin if you have a greater than 10% drop in ejection fraction, or a drop in 10 points - between your quarterly MUGA scan or echocardiogram. Herceptin cardiac effect is thought to be temporary for most people, but anecdotally I have seem some who have never bounced back and have had to continue on heart meds. This may, or may not, be associated with folks who would have had cardiac issues anyway. The effect is congestive heart failure, but those who have had Adriamycin also have more risk as the CHF associated with that drug is more permanent. Keep in mind that Herceptin can also be associated with continuing reduced blood counts leftover from chemo - so check your hemoglobin number on your CBC, it can leave you with a slightly out of breath feeling, and/or palpitations, if the number is low. This is subjective - some people are symptomatic even if their number is in the "normal" range but on the low end. It took my hemoglobin quite a while to resume normalcy - more than six months after chemo, so definitely while I was still getting Herceptin only. I would also stress that infusion time can be linked, so if you are having what feels like cardiac effects during or same day as your infusion, ask to slow it down. Even if your docs/nurses say this is not a SE from infusion time - I have seen it too many times to believe that, and it is your right to have the drug infused over 90 minutes - that is what the dosing instruction say - 30-90 minutes.

Here is some study info:

http://jco.ascopubs.org/content/32/20/2159

http://link.springer.com/article/10.1007%2Fs10549-...

http://ar.iiarjournals.org/content/33/6/2569.abstr...

pboi

Arlene...you look great!

Katy...I want one! So pretty and looks yummy!

Allison...have been considering adding magnesium at night too, how many mg is your 1 tablet. I've been doing a super slow taper of my Ativan from 1mg and am almost down to 1/4 mg. This slow taper has gone well, and I'm still sleeping ok even with dose decrease. I do have some hot flashes which I'm hoping the magnesium will help with.

Sue...it appears rads fatigue hits everyone differently. I hope the fatigue gets better soon and you'll be like littleblue and ksusan, with it getting better during rads.For me the fatigue built up slowly and was at its worst for the 2 weeks after rads.

PB

Jackbirdie

Allison that is a great tip. I have magnesium spray only and fail to use it when it's not out in the counter to remind me, and even then.....so I might need to move a few things around in one small shelf in the kitchen for my growing supply of only the most absolutely necessary ones. Haha. Eating my words. At least they don't have calories. The words, that is.

Trvler

I am now taking 250 and last night I took 500. I did it because I forgot to take it Friday and I was constipated again yesterday. But I noticed I slept better. I will keep you posted. Could just be coincidence. I also need to taper off my xanex, PB. I was taking .25 only on steroid nights and then after surgery, I had to take .50 to get any sleep because I have to sleep on my back which is hard for me. I can sleep on my side starting Tuesday and get rid of all these compression stockings and girdles so I am waiting until then to start the taper.

Trvler

Katy: Can you tell me again about that light and Tamoxifen thing? The doctor now says she will use Tamoxifen on me. Before she said the after menopause one because of the clot but she is now convinced it was because of the port and says Tamoxifen. I have completely ignored any info on it because all this time I thought I wouldn't be on it.

Jackbirdie

Here Allison is a link to just one of several articles I read. It pretty well covers the issue.

Italychick

As for magnesium, I take one gram per day, two doses of 500 mg. the forms I take are magnesium glycinate and magnesium threonate. Sleep great, poop great lol. Don't be concerned if when you initially take it you get diarrhea. It will be short lived, like an hour or two, and disgusting I know, but every once in awhile it will affect me that way, and I kind of like it, feel like it cleans out all the toxins from treatment. Plus magnesium belongs in so many places in your body, but gets displaced by calcium and other things, like fluoroquinolone antibiotics (Cipro, Levaquin). It also helps me with any tingling in my feet or legs. I can't say enough about magnesium, for me it is a wonder substance. And as I posted before, I tracked my food intake for two weeks and figured out it was almost impossible to get the amount of magnesium I need. And for those of us on Herceptin, it is great for the heart.

Never had any sleep issues during chemo or any constipation. I slept full nights even after taking the steroids. Of course, exercising probably helped with that too.

I have also used it on travel, since I have a mental block about pooping in strange places. It is pretty much impossible to overdose on, so when I travel I pop it until I poop haha!

Magnesium chloride baths are great too.

So add magnesium to coconut oil as my miracle substances.

Italychick

Allison, I am no expert on tamoxifen and AIs since I don't have to take them, but I have a friend who went through the dilemna. She elected to go with an AI and ovarian suppression shots because she was worried about the uterine cancer thing and has high blood pressure, so she didn't want to worry about blood clots.

For what it's worth.

I make my bedroom as dark as a cave, no lights of any kind, and plantation shutters to darken the room further. I mean, it is so dark we need a flashlight to get up and pee at night, and I got very small, low intensity LED flashLights that we keep next to the bed

Jackbirdie

T- "pop till you poop" BAAHAHAHAAAA,

just to clarify, you take one each of the two types of magnesium you mentioned above?

And do you use Epsom salts for the bath or something else?

Here's my bathroom right now:

Italychick

Katy I take 900 mg of the glycinate and 100 mg of the threonate. It's the ratio my husband has determined works best for me. I've taken it for about 4 and 1/2 years.

As for pop until I poop, it saves me when I do flights, international travel because I get way out of whack. But it is funny the way you said it haha.

Yes, magnesium chloride baths. I lay in a big bath tub for 20 minutes, put on soothing music or nothing. I time the bath because I found without a timer I get out sooner than I think. 20 minutes in a bath tub is a long time.

SpecialK, I just switched from MUGA to echo for monitoring my heart function because I didn't want the radioactive stuff they were giving me. Any thoughts as to whether I may see a measurement difference? I get results back Monday I think.

Jackbirdie

Sleep mask- spend the extra $2.95 for the lavender

Allison- and anyone else wanting to block out light-

I have tried several sleep masks and have found the above to be the most helpful for me.

It's on Etsy, the store is CrackedPistachios. My recommendation is you spend the extra $3 for the fresh lavender in it. It is heavy enough (filled with buckwheat I think) so it keeps your eyes closed, but it doesn't bother me. I had forgotten I had it and rustled it up about a week ago and am now using it every night, especially in "light" of the Tamoxifen light studies.

Jackbirdie

Found this courtesy of Scuttlers and Sas on the pinktober thread. How convenient to finally have all the boneheaded comments in one easy place? I'm posting virally...sorry. Don't want anyone to miss out on it, haha.

Trvler

Haha. Love it, Katy!

Ok, so the way I am interpreting that light/Tamoxifen is that it is not that there can't be any light in the room. It's that you can't let light in your eyes. I, for example, sleep with a black sleep mask starting around 3 am so if the light comes in the room, I can still sleep. So maybe I should do it all night on Tamoxifen. But I was interpreting it to mean that any light in the room affects you, which seemed improbable, like it came through your skin somehow. If you are blacking out your brains' ability to perceive light with a dark sleep mask, it would be ok if say, an alarm clock light or a DVR light was in the room. Does that make sense?

Trvler

I think you and I were posting at the same time. I think the mask should be black. I have noticed when I try to use a grey one, I can see it. I don't know if it makes any difference that I am fair skinned and maybe light seeps through my eyelids easier than a dark skinned person. STUDY!!! Someone needs to do a study. I think the black ones would do the best job of mimicking a dark room.

Theresa: You don't need to worry about me getting diarrhea. I have spent the majority of my life being constipated. I am thrilled to take a natural remedy for it, too. I took prescription meds for about a year and my goal is to always taker fewer prescriptions meds. I would have said zero but I guess that's no longer happening. Do you get hot flashes? YOu aren't taking any hormone blockers, right? Do you get them at all? Did you go through menopause yet? I am curious what impact the magnesium is having on that for you?

Italychick

Allison I am post menopausal, about three years. I have gotten hot flashes I guess, random episodes where I break out in a head sweat. They have only been occurring since chemo, but are fairly infrequent. Prior to that, I didn't really experience many. No hormone blocking drugs for me since I am estrogen negative. It is hard to say if the magnesium helps me with hot flashes since I started taking it before I hit menopause and didn't really observe any ill effects from menopause. I actually felt better after menopause, but my periods were brutal because of fibroids. I worried about menopause and becoming a weak old lady, but that has not happened. My bone density is great, strength same as ever, etc. As an example, three people were trying to push a large SUV in a parking lot one day and couldn't budge it, and I went over there and pushed it by myself. I think menopause hits everybody differently, or else my husband has kept me in great shape somehow. He does all my supplement planning for me.

ksusan

Let's not lose "The negative effects of dim light exposure on tamoxifen treatment were overcome by giving rats a melatonin supplement during the night."

ksusan

Might be helpful:

Cancer Res. 2014 Aug 1;74(15):4099-110. doi: 10.1158/0008-5472.CAN-13-3156.

Circadian and melatonin disruption by exposure to light at night drives intrinsic resistance to tamoxifen therapy in breast cancer.

Dauchy RT¹, Xiang S², Mao L², Brimer S³, Wren MA⁴, Yuan L¹, Anbalagan M¹, Hauch A⁵, Frasch T⁶, Rowan BG², Blask DE², Hill SM².

Author information

Abstract

Resistance to endocrine therapy is a major impediment to successful treatment of breast cancer. Preclinical and clinical evidence links resistance to antiestrogen drugs in breast cancer cells with the overexpression and/or activation of various pro-oncogenic tyrosine kinases. Disruption of circadian rhythms by night shift work or disturbed sleep-wake cycles may lead to an increased risk of breast cancer and other diseases. Moreover, light exposure at night (LEN) suppresses the nocturnal production of melatonin that inhibits breast cancer growth. In this study, we used a rat model of estrogen receptor (ERα(+)) MCF-7 tumor xenografts to demonstrate how altering light/dark cycles with dim LEN (dLEN) speed the development of breast tumors, increasing their metabolism and growth and conferring an intrinsic resistance to tamoxifen therapy. These characteristics were not observed in animals in which the circadian melatonin rhythm was not disrupted, or in animals subjected to dLEN if they received nocturnal melatonin replacement. Strikingly, our results also showed that melatonin acted both as a tumor metabolic inhibitor and a circadian-regulated kinase inhibitor to reestablish the sensitivity of breast tumors to tamoxifen and tumor regression. Together, our findings show how dLEN-mediated disturbances in nocturnal melatonin production can render tumors insensitive to tamoxifen.

©2014 American Association for Cancer Research.

[Bolding is mine.]

Jackbirdie

Allison- I think the reason light under the door or a streetlight through a window is a problem because our eyes flutter when we sleep, so the light literally does get in. That's a guess, I haven't actually read that anywhere. Also, it might prompt waking up, then there you are with your eyes open and light coming in. It's bordering on sci fi voodoo for me, but I'm afraid not to pay attention to it.

Besides, I think the mask does improve my sleep anyway, which is important for other reasons. And I also agree the mask should be black. The mask I linked a picture to has a different fabric on the back. It is a soft fabric in solid black. And with all the buckwheat and lavender in it, it is much thicker than other masks I've tried, and the buckwheat kind of molds around your eyes. You can shift the shape around. No light getting in here. On a funny note, while I was searching to get a link to the mask I use, I saw one that says "fuck off" on the outside. Since I live alone and Jack and Tutti can't read, (and I would never talk to them that way) there is no market for that mask here. But just in case any if you need that.........