Starting Chemo January 2015

Cherylfg

My port is much better today. I actually woke up in the middle of the night because the pain was gone. I do have a huge bruise around it, which is why there was so much pain. I bruise easily and my doctor said the bruising is what was causing the pain.

I went wig shopping today and it was actually fun. I found one that is similar to my hair and felt really comfortable. I plan on primarily wearing it at work. I teach at a university and plan on wearing it during class.

lrwllms- I'm glad your CT was normal. That's great news.

Fyre990- congratulations on having your plan set up! I know what a relief it can be just having a plan.

How did everybody else do today?

RV6gal

Day 8 - still a good day but noticing a few new small issues. Heartburn,runny nose, and gassy stomach. In the scheme of things, totally manageable. 😉

Take care everyone

dimccleland

Hi all, I've been offline for a while with Christmas and then holiday. We got home on Sunday night and I had my port put in yesterday. Procedure went well although it has been a little more painful that I expected it to be.

I was supposed to have my first chemo session today but the oncologist wasn't happy with my bloods ... my liver function is slightly elevated and she's concerned I may have picked up a bug while we were in Thailand. We're going to re-run the blood tests on Saturday and I will probably have the chemo on Sunday.

Now I'm off to catch-up on all of your posts :-)

xx

JazzerciseGirl

Yesterday I had chemo class. I was surprised at how little I learned. Part of that may be because I'm in healthcare. But thanks to all of you and this website, I have learned so much. This site is the best!Thank you, again, for sharing your wisdom, strength and vulnerabilities. You all continue to give me strength and ease my anxiety.

I've decided against wearing a wig, except maybe on occasion. So, I bought some hats and a sleep cap through headcoverings.com which came yesterday. I like them a lot and they completely cover my head. Also, I'm going to get a Buff (thanks to TENNISFAN for the suggestion). I checked out their website and video and thought it was great, then saw a friend at Jazzercise who was wearing one. She reports they have them at REI as well as online.

RV6gal - Glad you are doing OK. Your daily updates have been incredibly helpful. Hang in there!

SweetHope

What's a buff?

Tennisfan

Bonjour virtual BC sisters!

Thought I would report on a few important, additional findings of late... Glad to hear everyone is doing ok - RVgal, sounds like you're almost out of the woods!!!

I am still hoping for no port placement but like one of you guys, my veins are tricky so they will likely make me. I'd rather be pocked 10 times than to get the port as I think it's not possible to play tennis with it (wouldn't it hurt depending on the moves I make - any insight would be greatly appreciated!!!)

About toothpaste, I read somewhere on this forum that Biothene toothpaste and mouthwash used preventatively would prevent mouth sores. I will also use water, salt and baking soda as if there are two things I want to avoid it's mouth sores and any intestinal issues. I HATE belly ache (no link with the toothpaste though lol).

Glad the Buff info was useful to someone ;0))). I bought a red one (they come in so many different colours and patterns) so hopefully I will look less sick when the time comes (I resisted the urge to buy a black one, my favourite colour lol).

Now, Cherylfg, I have a suggestion for you and anyone else who bruises easily or is always on all fours, like me (I grew too tall too fast so I am always tripping and hurting a toe, an ankle, etc). So I carry Arnica with me in both formats, gel and pellets. i know a lot of tennis people who always have some in their bag, just in case. Arnica pellets is homeopatic medicine. I am the living proof it works as I also took some two weeks prior to my BMX and at least one week later. Not only does it reduces bruising but also swelling. You have to take it as directed but I always take a few more on the day prior, of and post-surgery. My mom took some for open heart surgery with the consent of her doctor and orthopedic surgeons also prescribe it for faster recovery after bunion removal, etc. It used to be that you could only find it natural health stores but now you can find it in any big chain drugstore (at least in Canada).

Finally, my hairdresser, who was also diagnosed with BRACA2 and has IDC like me was sighing about not knowing enough about nutrition during chemo the other day. She mentioned something about leafy greens and how she would have eaten a lot of them if she knew before. Last night I started researching how can we help maintain our platelet count high. Well, exercise, good sleep, etc. But most importantly leafy greens. So this is in part why I started making kale chips and switching my prosciutto sandwich to arugula and other salads for lunch. Brocoli, swiss chard and several other veggies are also good for this. I don't think it's a myth as there are a lot of references to that on internet. I already told you about this fabulous book "Anti-cancer" which recommends to swtich to a mostly plant-based diet anyways so... Eating greens certainly cannot hurt! However I read somewhere to avoid spinach during chemo as something it contains is contraindicated. I will certainly ask my oncologist AND an oncology dietician about this information but thought I would share... As some you are learning the hard way, there's nothing more frustrating than getting your chemo postponed a week or more so I intend on working intensely on my platelet count lol.

Bon, I now type in the notepad to avoid losing my long-winded postings. I am actually at the hospital for a PS follow-up appointment so this was a great opportunity for catching up with you guys!

Tomorrow is pre-op prep and thursday is ovarian removal so I will let you know how fun laparoscopy gets... Frankly I am mostly worried about coping with overnight menopause and chemo at the same time. Unfortunately my cancer is hormone-receptive so I will have to cope using mostly... tennis. i have three new employees who have not passed their 3-month probation yet so I warned them to be careful around me for a while or else... Thankfully they are a great bunch and we feel like a team already so we had a good laugh. The first day they came in I told them that I have breast cancer, that I emailed them everything they needed to know and left them for three weeks to get BMX done - can you imagine!!!

Enough already about me - what about you today, ladies?

A bientôt,

Marjorie

P.s. One more tip, in case you didn't know: if in waiting room or chemo room and no wifi connection for you to use Ipad, you can use your iphone connexion to send and receive text and email messages on ipad. Just go to Settings and select Connexion sharing. If your iphone and ipad are close together the ipad will detect the iphone as a network... Once set up it takes 5 seconds to get an internet connexion anywhere as long as you have your phone (don't know if other smart phone types can do this as well but worth checking..). You can also do this with iphone and a computer!

P.s.p.s. Sweethope, look it up on the net. It's like a scarf but mor like a tube that you pass over your head and tie multiple ways. A lot of people who do sports like hiking, skiing, biking etc. wear them. Comfortable, easy to wear, cool in the summer and warm in the winte. Can be worn inside and outside too. They have cotton (jersey) but also merino wool ones.

RV6gal

Marjorie, thanks for all that great information. I couldn't find any reference to not using spinach during chemo but do recall being told most natural foods were ok. They did warn against pills/supplements.

I am the one with the tricky veins and I just got my appointment for the port surgery on Jan 14th. I don't think they can make you if you don't want it but I didn't want to have any issues on chemo days! Good luck on your ovarian surgery Thursday.

Since I'm here now I thought I would update on Day 9 which is looking like a repeat of day 8. Not bad!😀

MM, I don't have any background in the medical field but can totally relate to your feeling about chemo class. They make it very generic really and I had learnt so much here I didn't think much of it.

Hope everyone is doing well!

Cheryl, any news from dstar

Cherylfg

I talked to dstar yesterday and she is in good spirits. She has more tests this week and then she will talk to her doctor to go over everything. I've sent her our good wishes and told her everybody is thinking of her.

Marjorie-Thanks for the tip about Arnica. I've heard of it but I haven't tried it. I'll ask my doctor about it when I see her on Thursday. I'm also seeing our clinic's nutritionist and will ask about spinach. I took your advice tonight and ate extra greens!

Wendy-I'm glad you are continuing to feel good. You have made me much less nervous about starting on Thursday.

MMCLJ53- What did they talk about in chemo class? I haven't had one but I do have a meeting with a nurse. Maybe it is to go over everything.

My port is continuing to heal. It less painful and more of a tugging/pulling feeling now. I'm hoping that is gone in a few days. I'm going back to work tomorrow after being off since the beginning of December. I've enjoyed being on break but it will be nice to get back into the routine of class. My students will benefit from me going through chemo because I have lightened the work load for them. Their assignments are shorter so that I have less grading to do!

Cheryl

goldenpawsKim

Hey girls - just gearing up for my first treatment tomorrow (TC).... scared out of my mind but thankful for all of your tips, etc. I was told I do need the neulasta injection on Friday. Ugh. Hoping my SE are not severe. Was told to take Claritin so bought it For all others starting tomorrow, good luck!! We'll get thru this and KICK CANCER'S ASS FOREVER. Looking forward to mid March when I'M DONE BEST WISHES EVERYONE!

Beachbum1023

Hi goldenpawsKim, I always had the Neulasta injection the day after my AC chemo. The MO told me to take Claritin 1 hour before the shot. If needed for bone pain I would use it the next 3-4 days. I used the 24 hour Claritin, I would take it before bed when I needed it. Drinking water helps, flushes the system faster. I walked as much as possible, short multiple walks seemed to help as well. Good Luck tomorrow, any questions just ask. And everyone is scared at some point, knowledge is power!

Beachbum1023

Hi Tennisfan and RV6gal, I have had my port since early August, and I haven't had any problems with it. I do anything I want to, or feel up to. It was just easier for me to use and not have vein issues. I do keep something in the car to place under my seatbelt and I have Lidocaine cream to put on it one hour before my chemo infusion starts. It will numb it so no worry there. i hope everything goes well.

goldenpawsKim

Hey Beachbum2023 thanks so much. Just wish tomorrow was over .... well, I'm really wishing it was Spring in more ways than one. Its freezing here in PA so I'm wishing for chemo to be over and done with and warm weather. A girl is allowed to dream, right?! Thanks again. Keep you all posted. Anyone starting tomorrow also? Keep me posted on how things go .... always nice to hear from my "sisters"!! Take care.

cubbieblue

Hello All,  I'm new, this is my first post,  and I had my first chemo treatment yesterday.  So far pretty good. I think yesterday the only effects I was feeling were probably from the steroid.  I feel a little more normal today, and no complaints other than occasional stomach pains.  So can someone tell me how soon do SEs usually start with Cytoxan and Taxotere? GoldenpawsK, it looks like I'm a couple  days ahead of you on Round 1 of Cytoxan,Taxotere!  And it's also freezing here in Chicago, so more cold is probably heading your way.  I also love spring, so I'm with you on that as well.

PMR53

goldenpawsk

Good luck Dear with your first treatment!! I will be thinking of you and praying for you to get through this. I know it's scary! I start Monday. Did you get any information about chewing on ice during the Taxotere portion of your infusion? Also SpecialK talked about keeping frozen bags of peas on toes to reduce nail damage? I am trying all of it. It can't hurt.

PMR53

lovesBostons

Hello all, I am also new to the group.  I am starting chemo tomorrow and will be glad to finally get actively doing something.  Am anxious about the unknown and how I will react to the chemo.   Good luck to all who are in this too.  Your posts have been very helpful.  Knowledge is power. 

Cherylfg

lovesBostons and cubbieblue-Welcome to the group! I'm sorry you are both here but I'm glad we can support each other.

My first day of class went well. I started to get a little sore by the end but it was manageable. I definitely need to use a different bag to walk around campus. I usually use a bag that goes across my body but I could not find a way to wear it without hitting my port in some way.

My clinic has a volunteer program where you can learn about wigs and other head coverings. They will also give you a wig and as many hats, scarves, and other head coverings as you need. Everything has been donated and there was a great volunteer who taught me how to care for the wig and how to wear the scarves. They also had these little pillows that velcro onto your seatbelt to keep the belt from pressing on your port. A woman makes and donates them to the clinic as a thank you for helping her daughter through treatment. I used one of the pillows today and it made driving a lot more comfortable.

I start tomorrow and I'm both nervous and ready to go. I just want to start so I know what it will be like. And, so I will be closer to the end!

How is everybody else doing?

Beachbum1023

Hi cherylfg, I hope it goes great for you! I had the same chemo, and I finished 11/25. Drink water during the infusion, keeps you hydrated and flushes the chemo. I always felt good the day of chemo and the day after. Thursday and Friday were my recovery days. But it was the same schedule every time for me. So having Saturday and Sunday to rest should be good. I'll be sending some super powers your way!

Brandi999

I got port in Tuesday. Ow. Did my PET scan today. Tomorrow is a work thing and my last chance to clean. I got all the stuff on the recommended list for chemo patients at the store. I'm really sleepy after this very long day so I'm going to get some sleep.

JazzerciseGirl

Hello Sisters,

Had my port placed yesterday. I'm sore, but it's manageable. There was an emergency at the clinic, so I had to wait 4 hours for the procedure. I was truly hungry when that was done! But, I got the chance to talk with another woman who was waiting for port placement and starts chemo with me today. I think it reassured both of us, and we will see each other again this morning.

My DH then took me out to my favorite restaurant for dinner. I want to enjoy all my favorites before I lose my sense of taste. I'm a real foodie, as evidenced by my 195 pounds!

Cherylfg asked about my chemo class. It was very general since it was designed for anyone with cancer. We could ask questions, but only general ones. They described what Cancer is, the different types of treatments generally (surg, chemo, rad, etc), possible SE, how the pharmacist and nurses check the chemo 3 times, when to get labs drawn. I suspect it was helpful for some. But this site and the nurses at my clinic have given me far more info.

Good luck to all of us starting today.

Hugs,

MM

PMR53

MMCLJ53

How are you doing with your port? I got mine Monday and it seems to be okay. A "Power Port". I don't feel like I have much power right now.

Prayers to you starting chemo today. I hope it goes fast. Let us know how you feel. The faster we do this and we will be done. That's how I am looking at it.

PMR53

dimccleland

Hey ladies ...

MMCLJ53: I'm with you, have also decided not wear a wig. It was my birthday yesterday and I got a beautiful silk scarf from some of the girls at work to start of my collection of head coverings - now I just need to learn how to tie it!

Tennisfan: I also didn't want a port but my oncologist was adamant that I had to have one - I also have very tricky veins and they have been weakened by the Remicade infusions I've been having for the past 18 months (for my Ankylosing Spondylitis), I believe that I also don't have very many "straight" veins. The oncologist reckons that better a port and the slight discomfort it may cause than having to deal with collapsed veins and chemo drugs leaking under the skin which can be nasty. If they place the port properly you shouldn't have too many issues with it once its settled down.

Cherylfg: Glad your port is feeling better - makes me feel a bit happier. I had mine put in on Monday and the onco used it on Tuesday so its been super-sore and sensitive, hoping it will settle down and won't be as sore when I go for me chemo on Sunday. I've also been back at work for two days after being off for most of December and I must admit that I am exhausted tonight and very pleased that its now our weekend :-)

goldenpawsK…: Hope your first treatment went well today, I am hoping to have my first treatment on Sunday after a false start earlier this week. Will have another round of blood tests on Saturday and then my oncologist will decide whether or not to go ahead. My fingers are crossed - think I will feel better emotionally once the chemo starts - does that make sense?

I've had a tough week this week and am feeling emotionally drained, really hoping that my white cells are lower when I have my bloods done on Saturday so we can go ahead with chemo on Sunday.

dimccleland

Oh, I nearly forgot, I did have some good news this week ... my biopsy gave a diagnosis of triple negative but my oncologist ran some more tests (a FISH test) to check whether I was HER2 negative or positive and the result has come back positive ... I believe this is a good thing and she will speak to me more about it when I see her on Sunday :-)

Cherylfg

I just had my first port poke and it was great. I was worried because it is still really bruised but it didn't hurt and I didn't feel anything when it was flushed. I know I have been really unhappy about the port but I feel much better about it. I think it will make everything much easier.

Cheryl

Lrwllms

I got my power port yesterday, and it went great. No pain at all, thank God! Today I have a bone scan and a thyroid ultrasound. During my CT scan they saw one nodule they wanted to look at, but my doctor was not worried about that at all. Tomorrow I start chemo at 8 in the morning. I'm so ready to get this started and over with. I just hope my Side effects are limited. Good luck to you all, I'm blessed to have y'all as one of my support systems

dstar

Hello Everyone,

This is Dana and I have missed you! Thanks for all your well wishes and prayers, Cheryl gave them to me. You all inspire me very much: brave, strong and smart women. I had a bit of a scare with a possible met found on a rib. Spoke with my Onco Doc yesterday, CT scan came back clean, a couple of nodules on my lungs but those got ruled out as mets so chemo will start on Jan. 22 --I get to stay with my chemo group! The spot on my rib will have to be watched, if it is cancer, the chemo should get it. I will have scans after to see, and if it is still there then a blast of rads should do it. If you ever told me I would look forward to chemo, I would have said you were nuts. Now, I feel lucky to have the chance to clear my body of precancerous cells. I thought that chance might be gone for good for a few days. This is a rough ride, no doubt but I am feeling strong and resolved about treatment, glad to be able to get back to work.

For those of you recovering from port placement: mine has been in two weeks and is much more comfortable, should get even more comfortable when the stitches finally dissolve, the nurse said. Marjorie, I believe your tennis game would only be interrupted for two or three weeks if you got a port. Maybe they could place the port so it interferes less with your serve? Thanks for sharing your story about genetic testing. It was illuminating. I have had a few uses now from my port, with scans they put the radioactive isotopes right into it. Thus the "power" part of the Power Port. it has saved me large and painful bruises on my arm, is fast and easy to access, and the chemo can really tear up your veins if it leaks.

Wendy, thanks for going first! Your daily reports are great. I am glad you are getting a port, hope it makes chemo easier for you. I have been thinking of you, hoping for the best. I have noticed your kindness, it is a lovely quality.

Dimcc - it is good to have you posting again. I think if you are HER2 positive, then a couple of drugs will work to treat that side of your cancer, better than triple neg, from what I have read.

goldenpaws, how was your first treatment?

Best wishes to everyone that starts today, Cheryl, MMCL, lovesBoston and anyone else! Welcome to everyone new. I am glad you are here.

Warmly, Dana

dstar

Yay, Cheryl, good to hear about your port. Whew. You must be chemo-ing. Can I make that into a verb?

spookisgirl

HI, I am new here, but looks like I am likely starting chemo in a couple weeks, see the Oncologist for the first time on Monday and am a little nervous about it.

I found the first lump back by accident almost back in October and almost dismissed it because I am young and have no family history, but the same day I found the lump I also started getting clear, green and black nipple discharge, so I went right away to the health clinic.  They did swabs that day of the discharge (which didn't show anything) and sent me to get an 'urgent' ultrasound.  Urgent was more than 2 weeks before I got my appointment, so 3 weeks for first ultrasound.

At my ultrasound, I was told by the radiologist that they were seeing not one, but two lumps (one much smaller), and that a biopsy was necessary 'to see what type of cancer you may have, although it could just be an abnormal looking pappiloma'.  Needless to say I was pretty freaked out.  It took more than two weeks for the biopsy results to come back due to a holiday, and then I got a call to say the biopsies were positive.  It was more than a month after I found the first lump.  My doctor told me I had DCIS at first, but when I got a copy of the path report it said the big lump was IDC for sure, and that the second was 'at least' DCIS.  My doc explained better after that.

Once I had my Dx, I had a mammogran (because I am so young it's apparently hard to see things so ultrasound is preferred), and an MRI, all confirming two lumps.  I saw a surgeon and had a lumpectomy and SLND on 9 Dec. Before the surgery I had another ultrasound to put in the wire guides and the radiologist said he was putting in extra wires because there were several new 'spots' showing. I knew there was an issue when the surgeon suddenly switched from 'if you need chemo' to 'when you need chemo'.  She ended up taking only 2 lymph nodes, but much more tissue than she expected.  My margins were clear, but one was only .5 mm.

In the end, my path report showed one positive lymph node, 20 different IDC tumours wrapped in a bed of DCIS. I went from one tumour to 20 in 2 months--OY!  Because I had a positive lymph node, I have been sent for a bone scan (which showed an area of 'concern' and has to be repeated in 2 months to make sure it is not an issue), and I have a CT scan next week.  I am worried about the CT scan now as EVERY test I have had so far has showed something, although it likely will be clear, the cancer in my lymph node was encaspsulated.

I don't know yet when I will start chemo or if I will need a port, but I hope not.  I am a ballroom and latin dancer and intend to keep dancing through chemo.  I actually have a competition next week. 

Unfortunately the incision on my breast has so far refused to heal and I had a post-op infection which came up through the skin.  I am on my 3rd round of antibiotics and hope it will be all cleared up and won't delay anything.

Considering my experience so far, I am actually eager to get started with chemo--so I am no longer worried things might be spreading and I can know what is going to happen.  The not knowing is killing me.  I want to get it all over!

 

I am very glad to find this thread, your experiences have been helpful!  I will post an update on Monday when I (hopefully) have an idea what is going on.

spookisgirl

Slightly different from my longer post above I have some questions.

Did any of you experience hormone issues before your Dx? I started having hormone issues in May 2013 that got so bad I had to start taking progesterone hormone supplements for PMDD after blood tests showed my estrogen was off the chart and progesterone was almost nil. Since my surgery, it seems my hormone issues have almost disappeared, and I anticipate the oncologist will take me off of the supplements since I am PR+.


For S/E, I am ok with hair issues and nausea, but what concerns me most is actually weight gain. I have been losing weight gradually for two year and lost 75 lbs before all this started. I don't want to gain it back, but feel bad that is my biggest concern about side effects. Part of it has to do with being a dancer though. I am close to my goal weight and dance has helped a lot and is a big motivator for the weight loss. Any one else worried about that? I really struggle with weight loss and actually 'stalled' when the hormone issues started happening.

JazzerciseGirl

Chemo #1 went fairly well. My nurse was super smart, informative, calming and wonderful. The center was sunny and welcoming. Port access barely hurt, but it did hurt a bit when she removed the needle.

I had some nausea about 5 hours after completion. I was so upset. Then, it went away after I had a BM and an hour nap. Phew!

Dana - I am so happy to read your posts and that your oncologist has a good plan. We are here for you all the way. I've been thinking good thoughts about you all week.

Hugs to all that started today. Please share how you are doing

MM

Cherylfg

Day 1 for me as well and it went well. I'm almost done with my IV fluids and then we head home. The port definitely made everything easy. I'm a port convert!

The two worst things were that the meds gave me a bad taste in my mouth and the Cytoxan has made my sinuses feel swollen, so my face hurts. Next time I will take Claritin the day before and day of an infusion and bring some gum!

I met with the nutritionist and asked about spinach and probiotics. She said both are fine.

I'll write more later when I'm on the computer instead of my phone.

Cheryl