Starting Chemo May 2017

MsLin, next time I go, I may have to rock the bald head. I haven't lost my hair yet, so maybe I don't really look that sick? I don't know. I haven't had any nausea so far, but wearing that mask for so long made me feel ill. Not sure I could stand that and a scarf/wig. Spraying people with Lysol sounds fun, though!

I taught high school for 15 years...what subject do you teach? I agree, it would be more difficult with little kids. One of my best friends teaches 1st grade, and I have to admit that I am nervous about seeing her because I'm worried about all of the kid-germs she's carrying!

MsRobin, I hope tomorrow and the days to follow go well for you. I'm on Day 5 following my 1st infusion and feeling good. Only SE so far has been hitting the wall yesterday late afternoon. Just like TooQuiet said! Guess the steroids wore out, leaving me to sleep for far too long and waking up this morning with eyes so puffy I didn't recognize myself! I've been very fortunate so far, and hope that this is true for you too on your 2nd go. I have labs scheduled Friday to check my blood count and will see if Neulasta did the trick without bone pain. Try not to stress, believe that you will be fine.

P.S. I recall that your MO said it's possible you were weakened by the normal bacteria that we all carry around on our skin. In addition - my NP told me is that around nadir (Day 7 or so) I should eat only cooked produce. Fresh fruits and vegetables carry bacteria that's difficult to clean off completely. Even insect bites to the skin and bruises can transfer bacteria that can make us sick at our lowest WBC. So this week I'll skip the salads and fresh fruits and go cooked.

This is day five after my first AC treatment and I almost feel normal. The nausea and bone pain are gone and I was able to go to my daughter's 5th grade honors day. I went to Yin Yoga as well. It was wonderful and I actually felt hungry after I was done. Took a walk with the husband this evening before the sun set. A good day.

Hi Ladies!! (I don't think we have any men here, do we?)

I've been MIA for a few days. Seems that happens to lots of us here, huh?

Oh boy, so many people to respond to! I'll see if I can do it...

Notanisland-- I took the Zyrtec for one day, then got some Claritin. Took two a day for about 5 days. NO bone pain from the Neulasta! Yay!

msrobin-- oh, sorry to hear about your hair loss. But nice coincidence that your hats arrived. I haven't looked into head coverings yet. Summers in NC are so freaking hot that I can't imagine wearing wraps or scarves or God forbid, wigs. Generally I hate hats, but they say we need to protect our delicate little bald heads from the sun. What did you get? Indoor hats? Outdoor hats? Very curious, if you don't mind sharing info. There's probably a forum here for that, lol, as there are forums for just about everything! I should go look. Hang in there, and enjoy your new fashion statements. Personally, I'm gonna look into getting a whole-head henna tattoo!!

Bex1966-- Loved your detailed post! I, too, am going to set up a Facebook page. I not only have cancer, but a bunch of chronic illnesses (invisible ones). It's really tiring to type the same updates a hundred times to everyone who cares about you. Seems a FB page will save time, keep my family and friends up to date to the extent that they can handle, and maybe someday some other people can benefit from my blog. But yesterday I was trying to set up my new page and got so frustrated that I wanted to toss the computer out the window! Ugh. Will get back at it today, or um, maybe tomorrow, lol. Sorry about your constipation. I have the totally (and I do mean totally) opposite problem! The fiery diarrhea from hell! But as Shrek says, "better out than in!"

LeesaD-- I'm sorry for laughing, but laugh out loud I did when I read what you wrote about your good blood counts and feeling every one of those blood cells being made! Good job, lady! (LOL)

LovePugs-- I hope everything went well with your first chemo! Don't worry about being MIA...it seems it's pretty common around here...take care of yourself!

Irwells50-- Regarding the neuropathy-- thankfully my MO respects the fact that I already have significant neuropathy in both legs (bummer! they still don't know what caused it or if it's permanent) and he chose a chemo cocktail they don't often use any more for my type of cancer. He went "old school" with CMF, which has less risk of neuropathy.

One thing I found out is supposed to help a lot with minimizing/preventing neuropathy is CBD Hemp Oil. It's related to medical marijuana, but without the THC (which produces the high feeling). There is also CBD Oil from actual marijuana if it's legal in your state, and that's supposed to be even better than the Hemp Oil variety. I started taking it before I was diagnosed because it's supposed to help with a bunch of symptoms I suffer with from fibromyalgia, depression, chronic pain, metabolic dysfunction, poor sleep, and neuropathy. CBD hemp oil has neuroprotective properties, and research has shown it aids neurogenesis as well.

I tellya, cannabis products are amazing! and it's just politics in recent history that has made cannabis illegal. It's been used throughout human history for a wide variety of things. Crazy versatile herb! While I was doing my cannabis research, I found that it's widely used for cancer patients, but for far more symptoms than just the widely known anti-nausea traits: Neuroprotection/neurogenesis, pain relief, anti-nausea properties, appetite and metabolism regulation, cancer cell growth inhibition (kills cancer cells, inhibits formation of blood supply to tumors), reduction of chemo side effects and depression, and geez, it does so much.

Much of the info is anecdotal (but from enormous amounts of testimonials throughout human history), but there is actual scientific research on cannabis, just mostly not from the US. Big Pharma is even interested in getting in on the action, and has been applying for patents on medical marijuana (MMJ) products, and has been actively trying to prevent legalization so it can snatch up MMJ and steal the marketplace from the newly formed legalized pot industry.

I know there are medical marijuana and CBD discussions on this board somewhere, but I'm already a believer and I haven't looked into them yet. Anyone who wants to talk with me more about this is more than welcome. I'm not into pot--have no interest in it as a recreational drug, as I don't like the high and it's illegal in NC anyway. But when it comes to medicinal uses, I'm totally sold!

Oh, and if anyone decides to buy cannabis products... first, check to see if MMJ is legal in your state for cancer. It may be. Most states have some sort of legal MMJ, but only for specific medical conditions. NC allows exactly ONE condition: intractable childhood epilepsy. But I've seen cancer on other states. If MMJ is legal in your state, find out if you need a medical card, so some online research to familiarize yourself with MMJ, then GO to a local dispensary! You will be amazed at how knowledgeable the staff will be, and how many products are available for a wide variety of problems. If you're not in a legal state, you can get CBD Hemp Oil products online in every state. Some state, like NC and KY, have legalized "industrial hemp" production, usually in association with pilot research programs. NC just did this, and I am SO fortunate that the state's first dispensary is right in my town! And they just opened a second store yesterday. YAY!

If your only source of CBD hemp oil is online, BE CAREFUL and do your research! It is an unregulated industry, so it's buyer beware. the stuff costs a bloody fortune (for a variety of reasons) and there are unscrupulous sellers out there to take advantage of it.

Sorry I got so long-winded on this topic! It's just a suggestion! Altho I started taking the CBD hemp oil for non-cancer reasons, I'm so happy to have found that it's also such a good complementary treatment for cancer. I'm taking it as "insurance," so to speak. Must say, a week after chemo, very little nausea from my first chemo. No problem with appetite, and no foods are making me sick. No bone pain from the Neulasta (but I also took Claritin), and no pain on top of the pain I already had, no mouth sores or dry mouth yet (all my chemo meds come with that common SE), minimal headaches first 3 days. I'm feeling pretty happy with the level of SEs, except of course, the fiery diarrhea.

Oh my, I sure did go on and on about the cannabis. I hope I didn't offend anyone. It can be a controversial subject.

Take care everyone, and DRINK PLENTY OF WATER!! LOL

NCBeachGirl

MsLin, have you looked into rose gauntlets for gardening? They won't be cool, but you can get them that cover almost to your shoulder. Mine are elbow length. They're leather, so not necessarily cheap, either.

If the Claritin helped my bone pain, I'd hate to see what it was without it! I did read that Aleve is better for this, and we didn't have any, so I've taken some of that. It was definitely at it's worse 48 hours after the timed release. Better today, but not gone.

I am started on May 31st.

Welcome to the May group, Bev!! Sorry you have to be here, but really glad you found this incredible, supportive Community. Please let us know if you need any help navigating the boards. We look forward to hearing more from you soon, and wish you the best with getting your port placed and first dose on the 31st!

--The Mods

BJI, Throughout this journey that began for me in mid-April - I have found the hardest part to be the waiting.

You may start worrying about whether port placement the day before infusion is too close. Mine was on Monday and 1st AC chemo on Thursday. I had placed a dollop of EMLA (Lidocaine) cream on the port site an hour before infusion as instructed, but was unaware that there was a piece of impenetrable plastic covering the stitches! My onc nurse solved that by giving me a shot of Lidocaine prior to infusion (actually it was more like the prick of a TB test, at the port site) and I experienced no discomfort at all.

I understand your worry over hair loss, though initially I didn't think it was going to be much of a concern for me. You will receive good advice from others to "rock your baldness, scarves, hats, or whatever you choose." How fortunate that some have the courage and confidence to rock their baldness, but in all honesty, I do not. For the most part, I work at home and plan to wear scarves because I'll be undergoing chemo in the hot months through end-September. But when I meet with clients in their offices and at business lunches, I do intend to wear a wig. Comfort be damned! All I can tell you is to prepare - shop for your scarves, caps, hats, wig or whatever you choose to try. Schedule a time to have your hair cut short or buzzed, if that's what you decide.

Don't wait til after treatment starts to begin preparations for side effects. Spend this next week getting ready and the time will be well spent. You won't have time to worry! Keep us advised of how you're doing - I wish you the best!

Welcome, Ctang! We're glad you've found our community, and hope you find the support you need as you continue with your treatment!

The Mods

Msrobin, hope your day went well!!

I meet with my oncologist tomorrow to discuss all the details - when I'll start, what I'll get, and for how long. I'm hoping he won't want to start before next week; I have so much to do this weekend!!

My port that was placed last week itches like crazy, but isn't tender or sore, so DH says it's just "healing" (he's a pharmacist, but I don't know that that makes him an expert, LOL, even though he thinks it does). Actually, it's probably the super glue my surgeon used - where it's already peeled off, the skin is fine. I'll show the oncologist tomorrow, so not really worried about it. I can't imagine them using it yet, though - some of you had the port accessed right away? Mine is still covered with glue! Maybe they'll peel it off...

I plan to wear scarves when the time comes, and my daughter (the 22-year-old recent college grad) has been bookmarking YouTube videos. She knows I don't expect to be traumatized, because I've always hated my hair... think Pippi Longstocking's, only dirty brown colored, in a pixie cut - all ends poking out all over!

Love and luck to everyone, whatever phase you're in!

I know my Neulasta worked, because I have the bone pain to prove it! There are worse things, though

I have been working from about 9-4, and go home when the bone pain starts. I won't work Friday, since that's when my resistance will be low. I work for my husband, so I don't have any pressure there. Also, I can work from home if I need to

Hello all. I have been following and have read this whole thread. Thank you to all the trail blazers in this group. I am a BC repeat customer and these threads helped me a lot the last time. In 2009, I had DCIS with micro invasion. When margins were not clear, I opted for BMX even though my surgeon said it was over treating. After having kidney cancer the year before, I wasn't taking any chances! I also had a hysterectomy. 2016 ended with a suspicious mammogram and after lots of tests and waiting, got that call. Seems I fall in that rare recurrance after mastectomy, Finally had surgery the end of March. I had an area of DCIS and 2 1 cm tumors removed.Then the treatment debate began. End result, I am starting 4 rounds of TC tomorrow so I am joining this ride

Hi again everyone, it has been 2 weeks since my first TC chemo. The side-effects come from top to the bottom and left to right, just trying to manage them the best I can. I haven't had nausea and vomiting though I have 3 packages of queasy pops ready at home, work, and in my purse. Mouth pain responses well to the baking soda/sea salt gargle, also a spray of Biotin and a bag of sugar- free fruit drops. I also use extra soft toothbrush. I had a good appetite while taking steroid but lately I haven't had much. I just crave for sour stuff, like ginger ale, lemonade, oranges, grapefruit, and sour salad dressings like Italian and caesar, just like when I was pregnant. One night, my right foot had sudden neuropathic pain, it felt like an electric shock going through my foot. I also experienced leg cramps during nights. But the worst pain I have ever had was the bone pain/muscle pain from (I suspect) Neulasta. It was so excruciating and every breath I took even hurt. My whole body hurts, sometimes my back, and sometimes on my left side where I can't really pin-point from the surface. I wish the nurse or doctor had warned me about it, I had to read about it online and find out myself that people start taking Claritin the day before Neulasta injection. Anyway, Motrin didn't really work and they gave me Tramadol. It doesn't make it all go away but it helps. I've been working all this time but sometimes instead of public transportation in rush hour, I treat myself to Uber Pool. It makes such a difference in how productive the day goes. I tried Cold Cap the first time. I knew my hair would shed in 2 weeks and oh boy it sure did.... I have long curly hair but it doesn't feel like my hair any more, it's all dry, brittle, and matted. Today, my hair started shedding drastically, I think I left my hair all over New York City. It was expected but it is hurtful and discouraging, I think I took it pretty well though. I will wash, condition, and style it extra gently tomorrow with Carol's Daughter and see how it would look. I still do have a lot of hair and people probably wouldn't even notice, but I know it is thinning and it is getting all gray on the top. I bought some fashionable scarves and head wraps online. But I also went to a discount beauty supply store and bought a bunch of black satin head wraps, headbands and scarves for like $2.99 to $3.99 each. Even if I get to keep hopefully half of my hair, I would probably want to wear scarves, head wraps, or even wigs to cover the less than perfect hair until I can comfortably color and style it. My CC technician doesn't recommend using even the organic powder color like Madison Reed's. He wants me to leave the hair alone for 6 months after the final chemo. As far as eyebrows and eyelashes, they are still hanging in there. I have permanent eyebrows so it wouldn't make too much of a difference but I bought some false eyelashes. When It happens, I'd just try to make it fun with the new make-up regimen. I also went to purchase non-toxic, organic nail colors to take to a nail salon when I want to get my nails done.Since I will be going through 3 more rounds of chemo until July and then 30 rounds of Radiation from August, I need a few hats with big brim, parasols, and a lot of sunscreen. I have gotten great tips and advices from this community board, I hope I can pass them on to other women as well.

Babybiko - I am still working thru AC DD chemo. My chemo is on Wednesday which is my day off. Then I take a sick day the Friday after chemo. I work an avg of 10 hours a day Mon, Tues, Thur, and Friday.

Now having said this-- I am very blessed to work from home. Don't know how successful working would be for me if I was traveling to and from work and then working outside the house. It is nice to have drinks and foods I can eat readily available to me AND it is really nice to not have to use public restrooms.