Anyone Starting Chemo in June 2016

Heathet

I had my PICO device installed - comes off Monday so I'm hoping this takes care of the suture! I'm so on the fence with waiting to start chemo! My docs want the all clear because once I start any healing gets delayed and puts me at a greater risk for complications. Every week we schedule my chemo start date and it gets delayed ! I think the gal scheduling appts is getting frustrated with me ! She scheduled for next week but wants to hold off on any follow-ups until I officially start. And I'm back to not being able to shower !! Back to the sponge baths at least until Monday.

krekre

Aloha everyone!

Had a crazy few days. Got my first big bill from all of this. A $1,000+ bill (and that's after insurance kicked in). Bumming me out because I pay for the best version of my health insurance. They even call it that... Platinum Level. Sigh. Then, to add insult to injury, which seems to be the MO with this cancer thing, is that I found out that my Platinum level insurance was denying the P in my THP!

Argh in a bucket.

Fast forward a couple of days. My MO went to bat for me. Our appeal was granted and I'll now be getting TCHP starting Monday, June 20th. Only a 5 day delay. So that's good news. It's such a relief to have a date.

Bad news is that the baseline MRI found two more masses near my tumor and tomorrow I have to get more biopsies. I'm up to 7. I look a like a baby's been beating me up in the chest.

But, because I think I want to end on a positive note... I got a load of free make-up from my Look Good/Feel Better workshop by the American Cancer Society. I did not enjoy the class particularly, but I did like meeting the other women, and who doesn't like free stuff? Some women really loved the class. So I recommend people sign up if it's offered near them.

labscientistmom

chiming in to lots of posts: I am off work too, officially @work until end of July with paperwork for Dr to decide if I can go back/ intermittent/ restrictions etc. As far as state disability goes (Calif pays disability, Yay!) I am off until Dec 1 when all chemo & rads are done;. Onco thinks its better not to be exposed to the germy people, lab specimens, dirty counters w bugs in the air that is my hospital laboratory. Lab manager & supervisor are both super supportive, wanting me to stay off until I am ready to come back. Our head pathologist in the blood bank just finished her Bc treatment in the past year, so lots of support there too. I have been off 8 weeks since my surgery, and it's added to the weirdness of all this ...I like my job, and I miss doing it. I know its better to not get sick & exposed to stuff, but it makes me mad that cancer has taken that skilled, helpful to others thing I do away (I am clinical laboratory scientist, do lab testing and blood bank in hospital lab in Burbank).

Had round 4 of weekly taxol today. Premeds were fine, got feeling weird in the head, dizzy and unfocused pretty quickly after chemo started, so I chimed in as requested by the infusion RN. They stopped it, ran saline, checked BP and pulse, got the Dr. to come look @ me too. after a bit I felt better so they restarted it but really slow. I was ok after that, but now as steroids & benedryl are wearing off, feeling a lot more headachy and short of breath. Yes I used my rescue inhaler. One more day with my hair, YAY but did find one of my big toenails is turning black, BOO.

This chemo stuff is totally cumulative. Please ladies, & possibly gents, don't be complacent with premeds and not needing them if you were ok the first or previous time. Allergic reactions can happen or get worse EVERY time your body is presented with the allergen. Be safe people!! love you all, more later, A

SthrnYankee

moondust, Heathet ,labscientist, dolly-

Thank yall so much for the encouragement! I had a MUGA heart scan today to be sure my heart can handle chemo. As far as I know all went well.

I also made a call to my PS. He is out of the office until next week! Grrrr! However his associates will see me tomorrow to check this swelling out & see if it is fluid that needs aspirated. I am so tired of needles! However I will feel 100 percent better & be able to get around easier if I don't have this large mass under my arm!

I also see my BS tomorrow for a follow up & to schedule putting a port in. This was supposed to be done during surgery & I'm not sure why it wasnt.

I am supposed to begin Chemo the end of this month or first of next month. I am doing 4 treatments of AC .. 1 treatment every 3 weeks & then switching to Taxol once weekly for 12weeks. This whole losing my hair thing has me really bothered...I don't think wigs are for me. I live in Louisiana & I will lose my hair in the hottest part of the year...I'm thinking scarves/bandanas will be my go to.

Coffee-lover

I love all the activity on this site.

LJ2016 - I'm your chemo buddy tomorrow. I'll be at the center by 8am and sending good thoughts your way.

I decided not to wait for my hair to fall out. Hubby and I are having a head shaving party complete with bloody marys sometime this weekend. The thought of having to clean up my pillow every morning really makes me sad.

As you see from my name, I love coffee. If I can't drink coffee, I will be a roaring b*tch. Not sure what else to say to that. Oh, while I've cut back on drinking, I haven't completely given it up. Since I don't eat grains, my options are limited to vodka. There's a lot you can do with vodka.

Keep up the good thoughts. The positive forces are awe inspiring!

labscientistmom

Coffeelover, I still drink my coffee, cause no one said not too! No more soda for me, as I had reflux before the cancer was even a consideration, and it made my tummy sad! not an alcohol drinker, but there are some days....

SthrnYankee: wanna throw this out there, for all you hair conflicted, not looking forward to summer folks, checkout chemobeanies.com. they are really cute, and read the stories cause they are worthy of these boards!! USA company of two sisters, the one designed the beanies when the other got BC. i am gonna go try one on this week @a local pharmacy that says they carry them. If I like it, I gotta decide on a color....dinner and tylenol has me feeling better, Had a lovely evening chatting with a friend on our chemo night sister-date. Gotta chase my dawdling 12 year old boy to bed, so I can maybe get some sleep too. blessings to all.

Anonymous

T

This is my chemo cap. Above is if cold cap does NOT work, and below is what I will be doing if it does work.

I am going to be wearing a cap no matter what because I will most likely have some sort of thinning and loss on top of head PLUS, I am not going to go anywhere with grey hair for next 6 months. SO hat is at very least to cover up all my grey hair!

Anonymous

Labscientist, That has got to be quite difficult doing chemo every week. Why do they do treatment like that? I am curious as to why they choose to treat one person one way and another person a totally different way. Is it because you are Triple negative? Did they figure out why you felt dizzy during the infusion? I certainly hope your next one goes a lot better and you start to feel OK very quickly.

I know you have a cuticle thing you put on your nails...but have you tried simple tea tree? I read somewhere on this site about this having and antibiotic-type effect on nails. I suggest this because last week I had two fingers that were really sore under the nail and I took all nail polish off and washed hands and rubbed in the tea tree and massaged nails for around 30 mins with this. My nails are fine now. I know that your chemo regimen is one that can affect nails. I do hope you can save the nails!!! I think with us losing breasts/parts of breasts, hair, days off work, eyebrows, eyelashes and figures....the final slap is our nails. Come on GOD...let us all at least keep something of our own for these few months!!!

You also need to be taking selfies with the headscarves on. We need a fashion show. I have bought some very dull ones on Amazon. I also have used a site called Annabandana. They have some really pretty ones. I think it is a British site though.

I have read mixed things about coffee. One website suggests it can stop cancer from growing and another that it helps cancer to grow...And do you know what?? I am exhausted trying to figure out these things any longer. I have had to limit my internet searches these days, as I stay up too late and get myself anxious reading all about the things I am not doing/should not be doing etc.

Coffeelover, I have not touched Vodka since my student days. Had a very bad experience with that particular drink. I was dressed as tampon at the time (Freshers week at St Andrews University)...and possible, I just had a bit too much of it. I feel unwell with even just the smell of it.

Dolly

Cwhitney

Hey girls. Just wanted to chime in. They found my port. My breast surgeon put it in a great spot so I wouldn't have more scaring. The idiot nurses weren't used to that placement. I'm starting to not like teaching hospitals. Just wanted all of you to know that I look forward everyday to reading your posts. I haven't started chemo yet but you are all educating me with all of your tips!

Elocea

Hey! Thanks for the positive feedback on my hat+hair! Also, a new synthetic wig I ordered arrived yesterday and I have to take back what I said earlier....this one tops my real hair one! It's a very good quality and makes me look like 'me' again. LOVE it!

Dollydimple - I already cut my armpit length hair to a pixie cut. I decided not to cold cap because I have to have 16 treatments in total and it was very expensive to rent over 5 months (I'm in Canada). I'd also be responsible for my own dry ice, cooler... so big cost. Also, if I only had to do it 4-8 times, no problem... but 16 is a lot.

Question for you all - I'm scheduled for my port surgery on the 28th (will already have had two chemo sessions, but was as early as they could schedule me in)... and after chemo I'll still have Herceptin for a year+ every 3 weeks. Is a port worth it? What's the pain like for living with that/getting treatments through it, versus something else? I'm just proceeding forward as they tell me to but I'm just wondering what my options are and the pros/cons. Anyone have experience yet with this? Thanks!!

Moondust

Just a quick answer for Dolly about the turmeric before I leave for work. I take Turmeric Extract in a capsule, 900 mg. It is far more concentrated than straight turmeric spice powder. .It claims to have 855 mg of curcuminoids,.which is the active ingredient. It also contains black pepper extract, which is essential for us to absorb the curcumin. I used to make a turmeric tea out of the spice and used 1 tsp, with some ginger and honey. But that does not provide nearly as much benefit and it stains anything it contacts. I was afraid my teeth would turn bright yellow, so I switched to the capsules.

LJ2016

I'm here and I've done my labs. I'm waiting for chemo at 1:00. Praying for you coffeelover and all of you sweet ladies. I'll try to post about my 1st chemo experience. My darling hubby, Darrell, and my sweet daughter, Caity are here with me. I put the lidocaine on my port right after labs and now eating a turkey wrap. Hope I don't regret it...more later

labscientistmom

Elocea: I am so glad to have my port. it took 5 tries (FIVE!!) to get the IV started for the port placement procedure. That was worse, far worse than the procedure itself. They were even in the vein 2 of the times, they showed me the tubing, got good blood flash, but my veins were clamping down. They called it valve-y and it can happen when you are anxious( cause they don't give you no drugs til AFTER the IV is placed, that's just wrong! ) After a few weeks, the port doesn't bother me much, a little sore sometimes, but it was uncomfortable and hurting for 2 weeks, easy. The huge blessing is, I go for blood draw or chemo and its clean the port site, hold my breath & wiggle my toes on count of 3 and poof, its done! WOW, so much easier. Also, the chem itself can irritate the veins so they are harder to access even if not a problem at the beginning. I am grateful, being on weekly taxol, that I don't have to dread that IV placement and venipuncture every week.

Cwhitney: soooo glad they "found" your port. hopefully your body will find something else to chew on.

Dollyd/Angela in Scotland: the weekly taxol is because I am triple negative, grade3 very aggressive. Onco says that City of Hope feels that triple negative cancers are particularly sensative to taxol chemo, so they do that first. The weekly is for lower dose than dose-dense every 2 weeks so easier on your body for allergic side effects which are common with this drug. I felt yucky after chemo#4 as the drugs wore off last night, but tylenol and dinner helped a lot.) Also drank a lot as usual. mostly herb/fruit iced tea mixed with coconut water. Feeling ok so far today, maybe a little achy. Head is itchy, but hair is hanging on so far! I am not a selfie taker, but for you, I will attempt to send pics when my hair finally gives up the ghost & I chop it off. Thanks so much for the tea tree oil suggestion, I have some and will use it on my toes. Fingers ok with the avoplex so far. I really enjoy talking with you!

I go for CAT scan today early afternoon. Got my breakfast and as much water as I could in before 9:30 am. A bit anxious about not being able to drink until after the scan. Oh, and that the contrast dye doesn't zap my poor poisoned system even more. Prayers would be wonderful! Gonna take a huge water bottle of drink for after.

Blessings to everyone, I will update after my scan!

labscientistmom

LJ2016, I find something in my stomach during infusion helps. I usually munch on crackers & peanutbutter and greek yogurt.

But a turkey wrap sounds good too. Praying for you!

Coffee-lover

LJ2016- I'm almost done. 14 minutes more. No port problems, no issues. Lots of water. I will bring more snacks next time.

They were going to give me a neulasta patch for tomorrow but now want me to come in for a shot and additional fluids. Since I get so nauseous the doc wants me to come in periodically.

So far it's all manageable. Hubby and daughter are hanging out with me. I feel loved.

labscientistmom

Coffee lover: hooray for no drama or complications. Huzzah for company! Great job with lots of water, keep the fluids going for at least the next two days, it helps A LOT with the SEs. I like the munch on crackers & peanut butter & greek yogurt during infusion. cushions my stomach and infusion RN says yogurt is anti nausea too. Yay, yay for being loved!! Blessings, A

Anonymous

Gosh Ladies,

I went out today to the shops. So have not really done the 'boy in the bubble' thing totally!!! It had been my plan to not go out during my nadir days, however I went to Ikea and looked at sofabeds and then went to order a new carpet for my hallway. I also took stuff to the recycling centre.

LJ and Coffelover well done both of you for doing your very first chemos. I always find buying myself a present makes it so much better. You may both be feeling a little tired and under the weather tonight though...although I do hope not! I hope the next few days are great ones and uneventful.

Moondust, you are a star posting me all that info about turmeric before going out to work. I am going to ask next week at the chemo clinic about aspirin. I am assuming if taking Turmeric then I don't have to take aspirin too? I wonder what one is best or easiest to take? I think Turmeric maybe has more benefits doesn't it?

Elocea, I think the length of hair in that picture is lovely on you. I am planning on getting hair cut dead short after treatment. I am cold capping, but think that it will be easier to cut it to an even length and start all over again. I had been hoping to lose weight on chemo, but no such luck and so maybe I won't suit very short hairdo. You look like you'd suit any length though. I can appreciate why you are not cold capping if you have so many treatments. I am very very lucky to be on NHS.

Labscientist (Angela in California) Thanks for explaining your chemo to me. Triple negative was what my work colleague was about 15 years ago. She had different chemos from you though, I think. I am going to copy you and try some herb or fruit teas. For some reason I am not finding my normal coffees as pleasant as they used to be. Maybe that is not a bad thing. I am glad you are feeling a bit better today. I have an itchy head too. I am hoping it is just lice hahaha (who on earth would ever say that?) but I fear I am going to start molting too very soon. I am sure also that my eyebrows are looking very very thin. I am going to post a selfie for you tonight and show you my lovely new bandana, worn in two styles...groovy chick (emmm that will be with hair) and then all my hair shoved up inside to see what I will look like when I start to lose it. I hope your CAT scan goes well and it is quickly over and done with. I detest all these hospital visits we have to do. Don't these people realize we have forums to write on??? Please do update us all soon. I enjoy talking things through with you too! I hope your husband is now on school hols and is spending lots of time pampering you! I look forward to a selfie soon. It's lovely to put faces to all the different messages left on here. Makes you feel even more like you know the person. We are all tied to each other by a diagnosis and a MONTH. How weird is that?

Here is my bandana!!! I have them in black, red, electric blue, grey and purple

The middle one is what my hair looked like a couple of months ago. I will be sad to lose it. Even with cold capping, it will thin terribly I fear, but as my lovely friend Gareth said to me, you can grow back your hair but not a lung or brain or liver. I guess he is right. I have stopped playing with hair now and just want the stuff to start coming out and then it's another thing achieved and ticked off. Hurry up hair...

DistrictGirl

Congrats to all of you making it through one more chemo this week! One big step closer to full health!

Great tips, especially re: tea tree oil and yogurt for nausea - love both of those!

One quick note on supplements like curcumin/turmeric. I've been taking it religiously since diagnosis - it has such wonderful cancer-fighting properties!!! I was really surprised that my naturopath doctor told me to stop taking it a few days before I start chemo (also had me stop taking several other supplements that could have negative interactions). This is just based on the specific cocktail of drugs that I will be taking, and is NOT advice for everyone!! Just wanted to share because it was surprising to me - everyone's situation and treatment plan is so different so I just recommend chatting with your MO and naturopath doctor (if you have one) about any and all vitamins/supplements you are or are considering taking.

For ladies taking Herceptin and are concerned about heart issues (a small but present risk), I was pleased to learn that there are supplements like Omega-3s, Vitamin E, and CoQ10 that can help support your heart. Again, definitely talk to your docs about this (some MOs are very conservative and don't want you taking Vit E while on chemo) - it's not for everyone and needs to be tailored to your specific situation. But may be worth investigating further!

I feel like I'm learning so much more about how my body operates and what we need to heal by learning about all of these supplements, vitamins, and foods! Definitely a silver lining on this journey

Anonymous

Districtgirl, are you taking Flaxseed? It is meant to help prevent recurrence of BC. My docs know I take this and it seems to be OK to continue with.

DistrictGirl

Dollydimples123 - yep, flaxseed is definitely part of my new regimen! great to put in smoothies! ps - love the bandana - looks adorable!

Anonymous

I take my Flaxseed in a yogurt! Might start putting it in smoothies too. My head aches at all the different supplements and eating plans we could be following. I am only taking flaxseed just now as not sure what else is OK to take or not. I had purchased some biotene tablets that are meant to help hair regrow. But too worried to take until I know if they are safe to take. I might take a list of things in to hospital next time and check what is OK for me to take. I defo want to be taking that aspirin.

Dolly

labscientistmom

Dolly/Angela in Scotland: OOh, you threw it down girl, and sent me a pic of you, YAY. YOu look much better in it than I do. I will gather my courage and attempt to send you a pic too. My husband is taking our son to art class because of my benedryl on board for the premed to CAT scan. I am glad to say the CAT scan was easy, peazy. They were even about to scrape up a doctor ( from the urgent care next door) to place the IV in my port! yay! My head doesn't feel right, but I am glad to be home and we got a lovely fresh InNOut hamburger in the drive thru. It was yummy and my stomach is happy with it for now. I am so relieved it's over, Yay!

I finally remembered to check and my pubic hair is mostly gone. Noticed more hair coming out then usual when I comb it, so yes, my hair is doomed too. I like the perspective of hair being like stuff, you can replace hair but not a liver or brain or other vital organs. So, yes, we are killing cancer, Yay! I agree that I will deal with it mentally better once its done its thing. Hopefully pics for you later. blessings, A in Calif

Anonymous

Labscientist...laffin at the remark about 'throwing it down'. I am cheeky that way. And it's way better than 'throwing it up'.

I am glad CAT went well and that you stuffed your face with a burger on the way home. I have to admit to having IKEA meatballs this evening! And I wonder why I am the only cancer patient that is getting fatter and fatter? I had 20 meatballs and chips. Oh dear! I would eat my own hand if it wasn't needed at times!

The hair thing will be fine for both of us. I can lend you a bandana if you like! I was thinking about maybe purchasing a balaclava or two as well. Would certainly deal with the eyebrow issue!

Dolly (A in Sco)

labscientistmom

no need for loans I got several bandanas and a couple chemo hats. Also a boonie shade hat and just got a hat halo wig from American cancer society to wear with hats. my husband and son have a bunch of ball caps, so lots to borrow. I am thankful to be actually losing weight, I must really be the rebel, I actually lost some weight with pregnancy too. this is not the way I would recommend for someone to get a handle on what they eat. Most days I have bad burning insides reflux if I don't watch my portions and make good choices. I have a better handle on that the last couple weeks except for the flare up from hell on Sunday. Can I say I am super relieved that the chemo yesterday didn't make it flare up again. yes we will be fine, killing cancer warriors, thats us. GRRR!

blessings to you, A

Anonymous

I think this young woman is just super at doing her eyebrows. I am going to give it a try and follow what she does to the letter.

Coffee-lover

Thank you Dolly! I've been struggling with what to do about eyebrows. I currently have black thick brows and wondered what I should do. I see she is also wearing stick on lashes. Does that work if you have no lashes?

That video made my day!

Anonymous

Coffeelover, I really liked this too. Yeah she also does a video showing you how to do your eyelashes

labscientistmom

Dolly: WOW gal that was awesome! I am gonna try that too, I can do that! Thanks SOOO much for sharing. She has amazing false eyelashes too, but my skin doesn't like adhesives so I am a little unsure about attempting that. However, eyebrows are important for your face. My natural ones are blond, and I already have to accent them with a brown pencil or often in summer they don't show. My hair looks nice today amazingly, so I am loath to try my hats on for pics, but everyone will be away on Friday, so I will try to send pics to you then. blessings, A

Moondust

Ha ha, it is going to take a lot of practice for me to do the false eyelashes! I can barely manage eye liner and shadow. I can't even paint my nails! (never have). I had no sisters or daughters, and my mom was like me - very little makeup and no hair skills. My DH claims he painted fingernails for his two daughters when they were small, so he gets to do mine tomorrow. You girls will have to tutor me about anything other than a simple hat, too

DancingElizabeth

Hi All,

Just a question for those who've already started chemo...

Do you (or can you) drive to and from chemo? Or do you need someone to drive you?

I think I've read that on the first day of chemo its best to have someone drive you....but I can't imagine doing it like this for ALL the infusions...

Thanks in advance... :-)