Starting Chemo in December 2013

oranje_mama

Missy, Jackie, and others seeking to lose weight . . . I am back on the 5:2 fasting diet. I was on this diet from September - November (Dx) last year, and lost 15lbs (of which I gained back 12 while on chemo).  I find the diet easier for my lifestyle.  Basically you eat "as normal" 5 days a week, then on the other two you eat a very restricted diet.  The standard is 500 cal for a fast day, but I eat 700 (I am 5'9" . . and big eater .  I like it because I am the "Chef" in my family of 5 - a bunch of athletic skinny people (except for me!) - so they are not going to go for "light" food.  I find it easier to control my eating when I have to concentrate hard 2 days per week and for the rest I don't need to worry.  On non-fast days during the week, I don't count calories but I do try to avoid alcohol & dessert/snacking after dinner.  Fri/Sat/Sun I don't restrict myself at all. 

My 2 fast days are days that I'm in the office (eg Mon/Thurs) . . . so I typically eat a small, protein-rich breakfast (200 cal), skip lunch, then plan a dinner that works for me to keep my portion to 500 cal.  I'm in week 2 back on the diet and have dropped 4 lbs. 

There are those that claim that the 5:2 diet helps boost your immune system.  I don't know that I buy those claims, but it would be nice if they are true.  I mainly do it because I feel like it's something I can keep up with in the long run (although not something that I was able to keep up with on chemo!).  When you reach your ideal weight you can drop back to 1 fast day per week, or 2 modified fast days (800-1000cal).  I like it because it's easy to plan around parties, work events, travel, etc.  You can just switch your fast day around.

aff

Hi Ladies,

I am thrilled to have just found these boards. The information, guidance and support provided by everyone is truly amazing! I started chemo in December with four rounds of AC followed by 12 weekly rounds of Taxol. May 2 was a happy day as it marked my last treatment! I feel like I have been on a roller coaster ride with my weight. I was trying to lose some weight before my diagnosis and had lost about 12 lbs before dx. I lost another 10 lbs during AC and then gained 12 thanks to Taxol. I am trying to prepare for MX w/DIEP on June 6 which will be followed by rads. I have no idea what this will mean for my weight journey. I do know that it is coming fast and I have a good amount of anxiety about this next chapter in my BC story.

Leealice

Loved your beat it video Jodi

Hmm. I'm also vitamin D deficit. I had never been tested until after chemo so I don't know if it's a new thing or not. There is a link between vit D and bc

1/2 way thru rads. Area being treated is very red and broken out. Overall so much easier than chemo

Lisaj514

wow I'm so behind in these boards and if you go back a page you loose what you wrote. Duh! Was away for weekend at daughters college grad

Leealice, regarding vit d it is recommended to keep it high especially for tnbc between 60-90 (over 30 is considered normal). I was taking 2000iu but increased to 4000iu after reading this on tnbc foundation article. Just had it checked and it is 54 so that's good but may increase to 6000iu. Talk to your MO about it and do some online research, it has to be vit d3 and not the prescribed vit d I think. I'm going to check again what I read. Look at the triple negative thread. I know there is info there as well. Inspiredbydolce  talks a lot about nutrition on the triple negative thread and has linked articles. Going to check it out now.

Jodi040812

hi everyone!  How do they check levels?  Is it a regular blood test?  No one has said anything to me about it:(. I did read about the vitamin d3 though!  It did say take d3.  I'll be asking about that when  I head back June 3rd. 

Michelle-  I think it was you;). Asking about the nodes.  The nodes between the breast are not removed during the first node check.  That is where my positive node is!  It is one of those suckers!!  Those are a little deeper.  I say fire away on all of them!!  For safe measure;). 

missy6758703

Good advice Jodi! They can have at em...all they want! I was supposed to start rads tomorrow, got a call today the the RO didn't want me to have a 3 day weekend break after just starting them so now i guess i start on Tuesday! I sort of was bummed because I want to just get it over with! 

I just want to say thank you to everybody on here.......what an incredible group of women you all are.  Your advice, wisdom, strength, courage, friendship, stories.......it gives me hope each and every day! Nobody else really seems to know what its like, or what we are going through....sisters who have most never met, all going through the same battle.  I'm glad you are all on my side and that we have this place to come to.  

Gotta watch The Voice......

G'nite all.

Michelle

Jodi040812

It is so nice to have this board for sure!  Not sore how many of us there really is, but getting everyone's perspective helps!  I mean I forget to ask the doctor something, but someone else remembered to ask theirs and we get an answer!  I always find it comforting when someone says hey my dr is doing this and someone else says me too!  We are not alone.  No one else have a freakin clue lol!  I personally do not know any survivors that are close.  No one I can call up or text.  I do have one friend from college that I can FB message.  She did not come out like I have about having BC.  She had 4 chemo treatments and was on a different path.  She is doing good though!! 

I do have a question lol!  We are a mix group of DX.  From stage 1-3 are represented, but we almost all had 4 AC and 12 taxols total. You think they just go for the big guns on everyone now in case of micro mets?  I am a big stage gal, but I was wondering about the DCIS or stage 1 gals.  Did they ask do you want it all or was that just the plan?  A women in town has been DX and she had a BMX with no node involvement.  She said she was meeting her MO, but never came back saying chemo or whatever.  I am worried they will not do it.  She is staying here in town for treatment.  This made me think and worry about her.  I also Have 3 ladies I met here who none had chemo.  One is going alternative, one had rads and one is doing hormone therapy.  Mind boggling to me, but I have not said anything to them I guess because I do not want to offend them.  It is completely not a place from thinking my way is right, it is a panic, anxiety worry thing.  I am so scared that they will get sicker.  That is why I am so blessed to have this board.  All of you going full out fighting.  I do pray for all of you, but I do not worry.  Does that make any sense?  I guess I just want everyone to be ok, and if that means getting chemo then get the damn chemo!  Just don't roll the dice.  Kind of a sad vent sorry.   

Fight fight dammit!  I guess I am fiesty.  I wish I could shake them or inspire them anything!  So, if this new friend doesn't get chemo, would you say something?  I think I am going to message her and tell her what ever her MO said for treatment I am here.  Praying they said some form of chemo.  Just not sure.  

oranje_mama

Jodi, I know what you mean. Chemo sucks but I can not imagine ignoring an MO's advice on this.  Some people do that & are lucky. Some not so much (look at Steve jobs).

I had 6 TCH (taxotere, carboplatin, herceptin) which is the standard of care for Her2+. There was never any question about chemo. If you are Her2+, you won't find a doc who okays skipping chemo. Since Herceptin is the wonder drug for Her2+, I asked why you can't get H alone! Beside the fact that no doc will want to risk it, there are some studies showing greater effectiveness of herceptin in combination with chemo (apparently).  

Jodi040812

she just posted and said no chemo just radiation.  I do not know her path report but just wondered because some people here had very small tumors and no node involvement.  Her+ makes sense I didn't look to see of the lower stages were that.  And maybe trip neg too?  Is that an auto chemo?  If so, maybe no chemo just rads is normal?  It just looks like this group is so diverse and we all got it.  I wish I was a forward person and asked her why not.  

RHGSR

Jodi- my girlfriend had DCIS stage 0-1.  She had BMX with DIEP. She didn't need chemo. And only reason she had rads was because they didn't get clear margins. She got a BMX because her mom had had BC.  So even though her BRCA was negative she thought the BMX was the best way to go. 

I was going to just need chemo prior to surgery because I had DCIS and IDC.  My IDC was large and since I was under 40 we wanted to be as agressive as possible. Prior to surgery I was stage IIb. After surgery the path report showed the IDC larger than expected, extensive DCIS, and an ILC all in the same breast. That and positive nodes solidified chemo. But because I had positive nodes, margins that weren't clear, and the vascular space invasion... This got me promoted to have rads along with chemo. 

I hope that helps some with your questions... 

keepthefaith

Jodi, being Stage 1 , grade 2,  w/dcis , and a 21 onco score,no nodes, I pretty much chose to do chemo but told my MO I did not want Adriamycin unless she thought it was absolutely necessary, as there is heart disease on both sides of my family. I could've not done chemo and it may not have made a difference; just didn't want to take that chance. 

I see a few posts now and then that there are those who chose to do neither for whatever reason...sometimes it feels like a crap shoot! I honestly don't think our medical professionals have perfected treatment enough, to each individual, so we have to do the best we can with what we have!

RobinLK

A friend of mine was Stage 0 DCIS and was lumpectomy and rads only. Small tumor and no node involvement. 

I got re-mapped...all my magic marker was gone when I woke up from surgery. Not sure when rads are starting now...

I also feel like I got a dose of Taxol instead of Herceptin last week. I was at my MO's other office. Only one bag of fluid, but SE's like chemo were back this week. Some I haven't seen in 5 weeks. Will be discussing with MO on Friday, maybe it was a drug interaction with something used during surgery the day before....

jbokland

Weight gain is such an insult after all we have been through!  

Not to mention to be thrown into menopause while dealing with chemo...  Good thing we a tough ladies.  Men round have never survived this crap!

I take 50,000 u vitamin D once a week.  

Mikesgirl17

When I was diagnosed in 2006 with d.c.i.s. I was offered a lumpectomy or mastectomy. I did a double mastectomy so I wouldn't have to worry about it again. No rads or chemo was recommended.  I had wide clear margins.  This time it came back as tnbc in the same area.  1 cell must have escaped during a biopsy, They think , and lay dormant outside the breast tissue until 2013.  If I had rads back then, I don't think I would have had to go through this hell again.  I am in the 5% that have a mastectomy and still have it return.

Jodi040812

ok!  Y'all made me feel better.  I just was looking at your stages and thinking if someone here at stage 1 gets chemo why not all stage 1.  Chemo brain- duh margins!  Sometimes the worrying takes over.  She did say no chemo but it meeting with a RO.  I'll pray for rads so they can get any strays.  

Lisaj514

initially diagnosed with DCIS stage 0 after a core biopsy. It was small, just under 1cm. Lumpectomy and rads recommended. After lumpectomy and SNB (my lump was towards the arm pit) stats changed and found to have a small invasive component and TN. So now needed chemo and rads. Even though negative nodes and clear margins, due to tn I had to have chemo as no targeted hormone treatment for tn and would be ~40% chance of recurrence which is too much so I was in for the whole shebang! I wouldn't have met you girls if I "only" needed rads!

Saw my MO yesterday for 1 month f/u. Blood work looks great. All levels normal or back to normal and my vit d3 level was 54 (was 44 in jan). I had asked for the vit d test. I had increased my vitd3 to 4000iu/day. Rec level is 60-90 for tn BC. Normal level is above 30 but should be higher for BC pts. So I'm heading in the right direction. She also said no other scans other than mammo, US (as I've been having for the past 20 yrs) and MRI 1xyr. Unless there are some unusual sx (we need to know or bodies and what is unusual) that persist ( ie she gave examples of hip or back pain that is not typical for you and not related to activity ie gardening in beginning of spring, headaches that are different and don't go away, cough that is persistent) then an additional scan would be done, pet, cat... Often there are unusual things found in scans that start the ball rolling and often are nothing but then we've had biopsys, other invasive tests, worry, stress panic etc. she said if "something" is found early or if waited until symptoms (ie a persistent cough) it does not change the survival outcome.....hmmmm. It only could cause things to be tested, prodded, removed etc and not needed. It's a fine line between wanting everything to be scanned and knowing everything is ok (but not always) or just living and if something "unusual" comes up then testing. Lots of us have been on the scanning, testing roller coaster lately and things have gone away or came up negative. It's a complicated and interesting discussion

On the good note I'm feeling really good! Yippee! Have the second cat scan fri to plan for rads here locally as dont need the resp gating ( she said my heart was in a good place, like that!)... Thanks doc! Then hopeful start in a week. Daughters grad was great. Felt great but my feet hurt walking in dress shoes (I made sure to wear flats but still hurt). Did some gardening yesterday and so tired afterwards but a good tired because it was because I did something different. Feeling better today

Long post again...hope everyone is feeling well

missy6758703

The first scan I have had since diagnosed was during my mapping for rads.  I have always found this odd that I haven't had anything to this point.  I mean, they did chest x-rays, echos, tons of lab work, but never any scans.  Maybe its because my bloodwork was always really good, i don't know.  I asked my MO about when and if i would get a pet scan, and she said once radiation was complete she would order one.  So i guess one is coming, but my thoughts were and have always been if it had spread, wouldn't somebody want to know???? like me for example??!!! Maybe they can tell more from labwork than I realize.  Also during my surgery i had good clear margins, but at the same time, i had lots of lymph nodes when all tests done prior showed most likely NO LN involvement....so who knows. 

This tamoxifen is making me have ovary pain.....must be killing it? Cause now i have pain in my lower pelvic area so now i'm convinced i have ovarian cancer......Ugh.  

Just one of those days I guess...............

Michelle

RHGSR

fortunately I didn't gain any weight during chemo. I started overweight anyway. I need to lose 50 pounds. I had lost 30 before my last pregnancy. But gained it back during that pregnancy and just haven't lost it again. I am concerned what the Tamoxifen will bring once I start that. 

I feel so bloated. I have through the whole chemo experience. I look pregnant even though the scale says I haven't gained. The PS cut the bottom part of stomach for DIEP. So I feel like I am so out of proportion - excessively swollen/bloated on upper abdomen as opposed to lower. My pants/jeans don't fit cause they fall down due to how my abd. is shaped. Frustrated at how I look and still lacking energy. May 27th will be 4 weeks PFC ...

DJJ

I had my mapping for radiation today.  My heart is also in a good place :-)  No gaiting.  I have my practice run next Thursday and start rads June 2. 

I had no choice on chemo, not only because I'm HER2+ but also because I'm grade 3.  My understanding is that grade 3 also has no choice.  Then you throw in my age 41 when diagnosed and I get the whole shebang.  All for a tumor the size of a pea!!!!

Robin, it may just be the way you react to the Herceptin.  I've had 3 Herceptin treatments on their own.  My other 3 were in combination with Taxol.  I find that the week after I'm a little nauseous and have a slight upset stomach.  I think the nauseousness from the chemo masked the nauseousness from the Herceptin on my first 3.  I get two weeks of feeling good and a week of feeling off for another 8 months.  But it is our liquid gold, as oranje_mama once called it.

I've had no sign of a period and no sign of menopause.  I have an appointment with my MO June 6th.  I'm going to ask about blood work to see.  I hope that I will never have a period again without having to go through menopause!!! I am getting hot flashes in my hands though because of neuropathy.  Hand flashes

I'm having a problem with my weight to but opposite.  I was at a good weight when I started chemo.  After AC I had to buy size 4's cause my 6's got to loose.  Then on Taxol my size 4's started getting loose.  Now I'm on 60mg of Cymbalta for neuropathy and it kills my appetite.  I've lost 12lbs since this started and I didn't need to lose any.  My BS was concerned at my last appoinment.  I'm trying to put some back on but most food is unappetizing. I don't want to have to spend money on new summer clothes cause I know I'll put it back on as soon as I'm off the meds.  I'm going to stop on the way home and get some Ensure to try and add calories to my diet. 

kimie06

Jodi - I agree with you on all of the different treatment plans.  I don't understand how it all works, but I knew before even getting my pathology back that I was going to need both, chemo and rads.  Due to the size of it.  I have met women who have only had mastectomies and thats it no treatment what so ever... at the end of the day I don't get it, guess I don't have too.

I Had rad #9 today and so far so good, no se's yet, I know the burning etc is likely on its way, I cannot see me getting off easy on this one, however I feel someone owes me something. HA

My period has not retuned ....yet...... but my MO told me she fully expected it too as I am young, I would be perfectly fine if I never had to buy another tampon again.  I did have one random period while on chemo.  It sucked.  as if I didn't feel shitty enough Mother Nature thought that was a good mix to add to the shit storm I was already experiencing and was only allowed PADS !!! that was nice.

I am being treated at the Princess Margaret Cancer Centre in Toronto it is one of the top centres in the world for cancer, and I asked my radiologist yesterday about a scan, cause I was like I want to know this monster has exited the building...he told me they don't typically do any scans because as far as they are concerned its gone... wtf... I said so basically I need to go crazy for the rest of my life is what you are telling me, he said there are no blood tests etc that tell them about breast cancer.... really is that true? gave me the same spiel they don't do anything unless there are symptoms... GOOD LORD!!! if thats the case the ER and my family physician better get ready to see about once every 3 weeks then cause every ache, pain, twinge, pull will have me convinced it has spread.  How hard is it to give me a PET scan ...seriously... plus I still have that freaky minuscule teeny tiny thing that showed on my lung that no one bothered to tell me about until my last chemo because it had all the characteristics of a granuloma.... again...nice...... its in my body ..so please tell me about it.... I just don't think other people get it...

anyhoo I was hanging at star bucks the other day here in Toronto and Ben Mulroney came in and got a coffee that was my first brush with fame while being here, and you guys may not even know who he is ..LOL

I also went and had the fuzz that was growing all over my freaking face removed.  I am not enjoying the regrowth of hair all over my body, except for brows lashes and head hair obviously.

whew...thats the most I have typed on here in a long time.

Leealice

Jodi-I'm stage 1, clear nodes but triple neg and grade 3 so chemo was recomended. My MO did give me some options as to what chemo drugs I had but choose the more aggressive path to knock this out and give me the best chance for a long life

Lisa-Thanks for the info on vit D. My # was 23. MO wants me to take 5,000 vit d3 a day but to wait until after rads. I have been on the triple neg boards some.

I learn so much from all of y'all and it's nice to know we have each others backs and prayers

RobinLK

DJJ, I would think that.... but have been receiving weekly Herceptin for 3 weeks without any reactions. The only thing that changed was my surgery the day before, and the place I received my treatment. Very odd to have it happen out of the blue. Like I said, will talk with MO on Friday when we will go over my echo results to decide if I am going to start an every 3 week regimen or stay with weekly.... 

Lisaj514

kimie, even through your ranting you make me smile. I'm a lefty like you, with lx and dd taxol. I just realized that. This group would be a riot to get together with some day. Sometimes there is so much to respond to...that I just read and make mental notes. But I know someone is always here. Thanks girls.

Leealice, why wait for rads to be over to start vit d? I've been taking vit D3 for ever and increased dosage about a month or two ago. Are you almost done wi rads? Also talked to my mo about metformin, it's a diabetes drug that can reduce recurrence in tnbc, like tamoxifen for hormone positive BC. It's in phase 3 of a trial for tnbc with positive results but you can still be prescribed it even if not in trial. Google it or research it on triple negative board. She talked to an endocrinologist about it and willing to put me on it, it can't harm even though I'm not diabetic. See what your mo says about it. I'll prob start it after rads so if there is any reaction we'd know if from rad or the med.

Crazywabbit

Lisa, 

I agree this is a great group.  Comforting to know others going through the same thing at the same time and surviving! Rant away, it is often the same rants we all are feeling.

My Vit D level was first checked after I broke my ankle several years ago, It was very slow healing and the level came back 11. The only way to keep it > 30 was the 50,000 units twice a month.  my most recent level was 74, i was thinking of cutting back the dose but now I guess I will keep it at that level now.

FYI there is a Summer Rads topic started now for those early on into RT or starting soon.

Barbara

Jodi040812

Lisa- great info!!!

I can't believe we made it through chemo and never said why we were getting it lol!  It makes more sense now!  Chemo for any of the following- margins, TN, Her+, grade 3, tumor size being large, and of course nodes.  So, no nodes, low grade, small etc could be just rads. Makes me feel better about the friend.

As for the scans, I have only had the original work and then one ultrasound after I finished Taxol but before AC.  I just can't take their word for it either!  I want to know.  However, I will because I have had a BMX and the following scan found more cancer.  So, we know it was in there during chemo where some it is gone or the BMX would be after chemo and they would have gotten it then.   I know what will happen if it is still there after rads:(. They said surgery to remove it or more chemo.  I'll not think of that;).  In my head- it is gone!  The A is suppose to be a badass so thinking it got it.

Blood test- not 100% but there is the ca-27(I think) and ca-15 that checks some kind of levels in your blood that can be a sign of reoccurance.  

Lisaj514

Barbara, 50,000 units of vit d must be prescription and I thought prescript strength was vit d2 and we need vit d3. The kind you get from the sun. The vit d3  blood test is 25 hydroxy vitd from what I know. But your level went up nicely to where it should be. Hmmm Just wondering. My mo said she'd prescribe the 50000 units but I told her I'd stay on the OTC as I thought that was the vitd3. She was going to look into it as well to see the diff between the prescrip and OTC. I thought the vitd3 was more sig for Tnbc.

Crazywabbit

Yes it is vit D2 but it is converted by the kidneys to D3, so unless you have kidney problems you should convert it.  My level measured was the 25 hydroxy.  I just like the convince of twice a month dosing.  That used to be the only pills I took on a regular basis, now I have 5 pills in the morning and 2 at night. Hoping to stop a lot of the supplements I was taking for neuropathy when I run out of the current bottles of b6, B12 and L-glutamine. My neuropathy is 90 % resolved now that I am  3 weeks PFC

Barbara

Lisaj514

ok thanks barb. So much info to process and when I thought I was getting it..... I'm also taking alot of vitamins and supplements now, it seems like a whole meal itself, multivitamin, calcium, magnesium, vit d, fish oil, vit b6,  biotin, probiotic. At night-Prescript BP med (started when diagnosed as BP really high, maybe can go off or lower soon) and still take Ativan at night and melatonin to help sleep. What are all of you taking for vitamins/supplements? We sound like old ladies talking about our ailments and pills lol

missy6758703

the only thing I take each day is BP pill in the morning, I have been on that for many years, had severe pre-eclampsia with my daughter 18 years ago and the high blood pressure never went away.  I now also take my Tamoxifen each morning.  For vitamins I take 2 of the gummy multivitamins for women each day.  At night I take a stool softener (for the butt problem still) and clomazipan (sp?) to help me sleep and just relax.  I am happy to only have to take these......i'm not a good pill taker!

Jodi040812

I am going to ask about supplements.  When I started out, MDA said none.  Something about not knowing if a multi vitamin could fuel the cancer.  Sounds like a better safe approach but she told me no.  My RBC was always on the low side but she never recommended anything.   The two big ones I have heard about are the D3 and bL.   I know I need more omega 3.  It looks like I am going to have to get a juicer or something to get more good stuff in me.