Starting Chemo May 2017

One more step down in the process. I had my port placed yesterday. My word what an ordeal. I am being treated at SCCA, but they didn't have any openings for a port placement before my first treatment. They scheduled the placement at UW Medical. I had to wait for over an hour in radiology because they were so backed up. Once they called me back everything went very smoothly. It was an odd sensation for them to place it while still being awake. The coolest part was after they took the final x-ray I could see it up on the giant monitor. I could see the port and the line, but also the metal ports for the tissue expanders. It looked like I had nipples for the first time in over a month! I rested (slept) in recovery for 2 hours and then they sent me home.

This morning things are sore. I'm going to add insult to injury and go for an expander fill this afternoon. I have a friend going with me for that. The PA always finds it hilarious that I bring a different person with me almost every time. I have friends lining up to go with me for "boob fills." They find the process fascinating.

I can feel the port tube going over my collar bone. I have very pronounced collar bones and they put the line into my jugular as opposed to the sub-clavian.

Next up is the first AC on Friday evening. My treatment doesn't begin until 6:30 p.m. Hopefully I'll be able to sleep Friday night

DodgersGirl & MsLIn- thank you ladies for the information. I learned a lot from this support group. Understanding all the SE and preparation before going to chemo. I scheduled a phone meeting with my directors and hopefully they will allow me to work from home. My concern is that I work in the Accounting department and working from home would be hard. I process the day to day workload of our organization. I'm hoping I can go back to work on the second phase of my treatment.

Hi,

notanisland, I'm more than happy to share what I know about CBD and cannabis. I haven't looked in awhile, but I'm pretty sure you can find info on the complementary and alternative forums. Cannabis--both legal and illegal-- is so common among cancer patients. I'm not proposing doing anything illegal. If anyone objects to our public conversations, just ask and I'll take it private. It's just easier to type stuff once.

I can't remember our rules, seems we're not supposed to post links. I think we can mention companies tho. I started with Charlotte's Web CBD hemp oil products (CW is one of the original manufacturers, and well regarded), and then I added Palmetto Harmony. I know someone with fibromyalgia who is happy with American Shaman products. CW is both a company name and the name of a strain of cannabis they developed. There are many imitators, also many distributors of the real CW products. Same with something called Rick Simpson Oil (I know very little about Rick Simpson oils). Rick Simpson is an actual person who developed special strains and processes, but basically went "off the grid" and disappeared, I believe because of legal hassles associated with administering cannabis to people who could really benefit from it. People selling Rick Simpson oils may or may not be using his carefully honed techniques.

Oh, before I forget, one of the best sources of marijuana info is leafly.com. Be warned--it's all aspects of marijuana (medicinal and recreational) and hemp! But they really know their stuff. I have lots of links bookmarked, BTW. And LMAO, my mom's computers and phones are all linked on the same network and cloud, and we keep getting each other's stuff, and LOL, often my cannabis stuff pops up in her Facebook feed! haha, I had to warn her when I first started doing cannabis research, and it's a good thing i did!

I use the strongest varieties because it usually takes high doses of meds to reach effective levels for me, and my problems have been with me for many years. Everyone is different--there are many forms of CBD hemp oil products, in different strengths. There are tinctures (extracts to be taken by dropperful under the tongue then swallowed), vapes (like e-cigarettes, sort of), edibles, topicals (mainly for localized pain relief), and a type of concentrated paste taken orally. They even have gummy bear-type edibles! Oh, lol, and dog biscuits! I kid you not.

CBD hemp oil is made from "industrial hemp," which is different but related to the pot that gets you high, in that industrial hemp products contain a very small amount of THC, or none at all. You can't get high off industrial hemp products. Nevertheless, hemp isn't legal to grow in many states, and i'm sketchy on the laws exactly, but if it's not legal to grow, it's not legal to be sold in dispensaries or stores. However, it is legal to buy online and have shipped to any state in the US. Some states, like NC where I live, just legalized hemp farming and selling of products, in conjunction with university pilot research programs. CBD hemp oil is NOT regular "hemp oil" or "hempseed oil" that you find in health food stores. Those products don't contain CBD.

Oh, CBD is short for cannabidiol, one of several types of cannabinoids found in cannabis plants. The human body is actually wired to use cannabinoids. We have an endocannabinoid system. We have receptors in many types of cells--don't quote me on this, but the brain, nervous system, and immune system are what I remember. So cannabinoids can help with all sorts of things, from regulating metabolism and appetite, stabilizing mood, protecting nerves, regulating pain, and a myriad of other things.

notanisland, I can't remember exactly how CBD oil works to protect the nerves, but there is a ton of info all over google. Search for "CBD and neuropathy," and then do variations, like neuroprotection, neurogenesis, cannabis, chemotherapy, radiation, cancer treatment side effects, you know, mix it up a bit. You'll find tons of info, some from mainstream research institutions, and lots from a wide variety of sources. I found a lack of info from human studies in the US, mostly our studies are on animals or cells. There is more human study info from outside the US. Look for sources that sound like our mainstream research institutes. Oh geez, there is even pro cannabis/cancer study info on our .gov sites.... or there WAS... the trump administration is deleting a great deal of that sort of thing from our .gov sites.

Because cannabis is so controversial in our society at the moment, you will run into lot of conflicting viewpoints out there. Just try to figure out which ones are likely to be reputable and dismiss the ones that look too wacky.

There are "whole plant" products and product "isolates." Different benefits to each. Which also makes it really confusing to compare products. Some claim certain CBD concentrations, some use another criteria I can't pull out of my head at the moment. Whole-plant products are said to have the "entourage effect," which is a way of saying it's best to use the whole plant and get the synergistic effects of a wide variety of cannabinoids and terpenes (terpenes are chemicals responsible for the fragrances in plants, and have benefits to our bodies). However, these products have lower concentrations of CBD. Product isolates have isolated the CBD and the products will be more concentrated, but lack the whole-plant benefits. That's part of why I combine two different brands-- one is a whole-plant product, the other is more of an isolate.

Because of these restrictions, (sorry...this is a continuation of a much earlier paragraph--I don't know how to drag and drop paragraphs on this computer, so my writing is awfully disjointed, I'm afraid!) the US domestic industrial hemp supply is limited. Also, CBD hemp oil products can legally only be manufactured from certain parts of the plant, unfortunately not the parts with the highest concentrations of CBD! Hence, it takes a LOT of hemp to produce the products. And you know what that means--unscrupulous sellers and price gouging! Well, it is what it is. Sometimes, because our domestic hemp supply is limited, you will find that suppliers have shortages.

Hemp is a "bioaccumulator," meaning it sucks toxins up from the soil and stores them in the plant. Therefore, it is essential to buy only from organic sources, preferably from the US. But there are some overseas sources with clean hemp, mostly places like Norway. Everything I read said do NOT get anything from China or eastern Europe. There are different ways to process the hemp. The purest way is with cold CO2 processing, which retains whole-plant characteristics without destroying the delicate terpenes and such (this is what Palmetto Harmony uses). However, there is another process that sort of liberates substances...I'm not up on this method, but I believe it's what CW uses. You do NOT want anything processed with chemical solvents.

Many sellers just want you to sign up as a wholesale distributor of their products, and they'll offer a free bottle or deep discount. Some are genuinely caring companies, and offer discounts and financial assistance or grants. It's an unfortunate situation out there--buyer beware. The best companies do 3rd party independent laboratory testing of each batch to assure a specific level of CBD. I wish I could be of more help with specific suppliers, but I got pretty overwhelmed myself, and then whoopeee! I discovered we have a dispensary downtown! I am SO envious of people in MMJ legal states where you can visit dispensaries and get the benefits of their knowledgeable staffs, not to mention the wide variety of actual marijuana-derived products.

Oh geez, hemp info overload!! All this thinking has wrung me out! LOL. I hope there is info in here that helps. Oh, regarding dosing, it's highly individual. I was taking about 110 mg a day, divided in three doses. But it wasn't helping my pain, and I ran out of my CW a few days ago. Money is super tight right now, and I'm not sure I can afford the CW, but I'm for sure going to keep using the Palmetto Harmony (about 60 mg per day). I'm hoping that's enough to help with cancer-related stuff, and hopefully neuroprotection and neurogenesis of my nerve-damaged legs. Pain relief is just gonna have to wait.

There's a tiny lady at the dispensary who uses just a few drops at a time to ease her menstrual cramps or anxiety. The friend who gave me my first bottle of CW was using it for cancer-related nausea. She only needed a few drops at a time, too. Some people use multiple forms of CBD products-- maybe they vape for one effect or speed of effect, and tinctures for their main amount, and a gummy-bear edible as an afternoon boost if they need it. Some people, like, I believe, the kids who use it for horrible epilepsy, use a great deal every day. But apparently it's a miracle substance for them, so their parents move their families to Colorado etc where they can get access to dispensaries and MMJ and the wealth of products and knowledge available there, and somehow they find a way.

Oh my...somebody stop me already! Swearing I'm ending this post now! Hope it helps, and feel free to ask more questions if you dare, and I'll answer what I can.

NCBeachGirl

Today was my first TC round. I had my sister and a friend who just finished chemo last week with me. I think between that and these boards, I was over prepared! I was kept busy and never had time for a panic attack that I was sure I would get. I iced my hands and feet. My MO kinda snickered when I asked him about it, but said it would not do any harm. We went to lunch, I came home and crashed, got up for dinner and went out for walk. I am now waiting and wondering what will come next!

Ciaci- Good luck on your PET/CT scan. I went through the same thing with insurance

Thanks for all the great advice, trying to be proactive and be prepared. Making a list of things to have ready.

And so it begins.  Chemo May 31st at 9 a.m..  You all were correct it is Taxotere and not Taxol as I was previously told.  You guys ROCK!

TCH and they stated no Perjeta after all.  The new ONCO said at my first appt. that he wasn't sure about Perjeta and when I received the call from the NP yesterday she said no.  I questioned why not and was told that they usually use it with mets and since everything came back clear they wouldn't do it, also said it was really hard on you when combined with Herceptin. (I have never heard that about Perjeta only being used for mets-I thought it was extra ammo for 2cm+)  I have read that Perjeta is for 2cm and over and mine was 2, I mentioned that to her as well.  Anyway, I go for training May 30 and will know more then. 

TCH once every three weeks for 6-8 treatments.  I am as ready as I will ever be I guess!

My employer is walking a fine line, because its my husband. He doesn't want me to overdo it, but if I felt like working a 48 hour week he'd be happy as a clam

It's very late and I'm super tired from a very crazy day filled with medical appointments and tests. Apologies for not reading thru posts and being attentive to everyone.

I've had a bizarre rash under the breast that had the tumor, and i don't know why i find this so bloody funny, but I have SHINGLES!! Yeah, guess my immune system took a very quick dive after that first chemo last Monday. All I can think of is those commercials and automatically felt 100 years old when the doctor told me I have shingles. Cracks me up. Anyway, it's not as bad as it could be. Kinda itchy, kinda painful. But nothing like the horror stories you usually hear about shingles. I may just be lucky, but it could be the CBD hemp oil doing its neuroprotective thing. Too tired to remember how the zoster virus works, but it has something to do with traveling along and damaging nerves when your immune system is down.

Goodnight, ladies...I'm trashed!

Thanks everyone on the encouragement about the employer. I sent an email to my assistant principal letting her know that I intend to make the call about starting back on Tuesday Monday night. One thing I have learned through this process is knowing my limits. I seriously overdid things after my hysterectomy and paid for it. This time I'm listening to my body and taking it easy. My thought is that it is the end of the school year and there really is not much of substance going on for the next 4 weeks. I'm going to administer finals early because I'll have a treatment on one of our actual finals days. Then I can get my grading done and not worry.

Upheld - my RO said the same thing about reconstruction. She said that radiation does damage to tissue and she doesn't want to radiate newly reconstructed breasts. Both she and the plastic surgeon said that natural tissue reconstruction is a better option for patients who have undergone radiation. I didn't quite understand why, but I was planning on DIEP flap anyway

Hello all,

Thanks everyone for sharing where you are in this process, it's been so helpful to read and in preparing for my upcoming (1st week June) 1st treatment.

MsLin - re: recon recommended afterwards, I believe it's because radiation impacts the skin (tightens) and the muscle, and there's a large risk of capsular contraction when there's a recon done with implants present when radiated, and further corrective surgery may be needed. However, if the person has had no recon (flat), they will be unable to have implants post radiation, because of the tightness of the skin/muscle will not allow for it. They tend to recommend delayed recon (like the diep) and will not want to do that until 3-6 months after end of all tx inclusing radiation. They would not want to radiate new skin/breast from diep, etc because of impact of radiation. At lease that's my understanding after countless meetings! :-).

Good Morning Ladies.

Second TC treatment on the 19th . Unfortunately the nurse screwed up and the port flush went under my skin vs in the vein. Talk about pain... oh my 3 days of being super uncomfortable and the edema is only 80% dissipated a week later. Between group chemo and either unprofessional or incompetence by nurses I am going to need to change cancer centers.

On the bright side, day 8 and no diarrhea where day 7 of my first treatment caused me to be in bed or on the toilet for 4bdays.

Could it be the Probiotics i am taking?

My fear is I didn't get the right treatment , how else can I feel ok?

msrobin58-- my MO has me on Ondansetron (Zofran) and Prochlorperazine(Compazine).

Maybe anti-nausea Ned's are prescribed based on the pre-meds with chemo?

I don't take any steroid pills with my chemo plan other than in the pre-meds

DodgersGirl, I haven't been given any steroids either, other than in my pre meds. Both treatments, I've gotten rosy cheeks on the second day, which I attributed to those steroids, but it didn't really disturb my sleep much. I'm grateful not to be bothered by weight gain from them. I need to lose weight any way, but of course I'm not trying. Still, I've lost 12 lbs already, and my PCP wants me to simply eat whatever sounds good to me. Too bad there aren't many things that actually do sound good!

MsLin, the steroids made me hungry. Day 2-3, I just couldn't get enough food.

Msrobin58, I wish not much sounded good to me! Everything sounds good to me, and other than my premeds, no steroids here. Starting yesterday was the start of my low resistance period. I went in to the office for a conference call, and on the way home saw the fried pie food truck. All I could think about was cherry pie, and I had decided I should only eat home cooked food this weekend. I made my husband go to Kroger and find pie cherries (which are hard to find here nowadays"), and made a cherry pie. 🍒🍒🍒🍒🍒