Starting Chemo, November 2013 Group
Comments
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Northwinds: Here is the link to the clinicaltrials.gov website that shows that there are 2 on going clinical trials investigating the use of Claritin to help prevent the bone pain associated with the Neulasta shot/Neupgen shots. I had to ask my onco if I could take the Claritin to help with the bone pain. I told her about the clinical trials and she said she was unaware of the use of Claritin but it was fine for me to try it. Fortunately, it worked. I took the Claritin for 7 days starting on the day that I received my shot. I took the regular 24 Hour Claritin the morning that I would receive my afternoon shot of Neulasta.
As for the wig situation, check to see if there is an American Cancer Society, Look Good Feel Program in your area. You can attend a free seminar on make up and get a free make up kit and also may be able to get a free wig from them, too. You might check the TLC catalogue too. I know there are other places that gals have purchased wigs for a reasonable price. I had a wig but never wore it.
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hi Ladies- I will be joining you all on Monday 11/18 For my first round of TC. this is my second trip to the rodeo
- had 4 rounds of AC chemo on '07 followed by a year of Herceptin... My first cancer was triple positive and I elected for a lumpectomy. This go-round I am triple negative so I opted for a double mx.
This board was a life saver to me in '07 and I am still friends with the gals from that journey....
I look forward to getting to meet all of you.....I think it might take me a little while to get up to speed.
All the best,
Virginia -
day after my first round of chemo and so far it's uneventful. I am taking my anti-nausea meds on time, also taking Pepcid AC since I'm getting a bit of heartburn. I started Claritin today, and got my first Nuelasta shot. So far I have mild aches in my legs, taking Advil for that. thank God for all the great tips here! I brought up the Claritin, and they were fine with me taking it, but I get the feeling they may not have mentioned it otherwise!
Preparing for more fatigue the next few days since today is the last day on steroids. today is an odd combination of tired and wired. -
My drip started at 9am, the lecture by the nurse took long. She had to dig for my vein, have a bruise from that, so I guess we need to drink until our backteeth float. I almost peed myself on the way to the hospital. She pushed the adryamicin slowly with a syringe, Cytoxan was a drip. Cytoxan made my forehead feel weird, so next time they are going to run it 40 minutes instead of 30. I was also told that the antinausea meds I got will work for 5 days. Felt fine so we went to Chinese buffet, pet store and trinket store. I fell asleep in the car on the way back. Slept 2 hours more at home. Started to feel puky around 5 took my Compazine. I have trouble drinking anything, even with straw. My pee is still orange. I've been sweating too. -
I took Claritin for bone pain, highly recommended by my DR and the nurses. On another note do you have a Visible Changes hair salon close to you? -
Will definately buy Claritin. Lissy, I dont know of any Visible Changes Salons by me. My friends mom was a beautician all her life, retired last year. She offered some wigs from her shop that over the years ladies left with her. However they were all much older ladies and the wigs are very outdated. Told my hubby I was going to take her up one one just to watch him cringe,lol. I don't know, maybe a Beehive" hairdo would look good on me! -
Trying not to completely lose it as my wound is getting worse instead of better. Dermatology can't see me until tomorrow morning. And the wound is worse than when my oncologist say it on Monday and said it wasn't healed enough for chemo. I'm afraid it won't be ready for chemo on Tuesday and at almost 14 weeks post op my chemo window is about closed. -
Quirkygirl, I am at 13 weeks and scheduled for chemo finally on the 25th but my wound is still open quite a bit too. It is scary and frustrating. The difference for me is my MO wanted me to start with the wound but surgeon said it won't heal and could fester up again if I go ahead. It is scary to have a time line and to worry about passing it.
I hope you can get healing. I will be thinking of you. -
Notthwind- visible changes also offers free haircuts as well as the free wigs. The variety if wigs is not large but 3 or 4 that are cute and layered. Just throwing it out here in case someone was interested. -
Wrenn, I so understand where you are coming from and hope you heal quickly. Wound issues are there own kind of hell.
Northwinds - can you get to an American Cancer Society wig bank? I live in a rural area and still got a lovely wig at our area office. In fact I'm wearing it in my photo. -
Thank you all for sharing your journey. I'm waiting on the phone call to start my TC either today/tomorrow 11.14 or Monday/Tuesday. I'm not sleeping at the moment, because I'm scared of the unknown and relieved that my treatment plan is finally started. My Onc. told me that the first treatment will tell me what "side effects" I will have. I got my port on 10.14.13 and have had pain with it since. I am a runner and I can't run without pain, so I now walk. I'm 36 years old and I have heard horror stories of the chemo-menopause. I want to work through this time, but considering I deal with the public and animals I worry about catching a cold and delaying my treatments. I do not want the IV steroids, but my oncologist said I have to have them with TC. I did order some frozen gloves and socks so my fingernails don't fall out. My worst fear is the peripheral neuropathy. Has anyone experience this side effect? -
Wrenn and QuirkyGirl, I hope your wounds do ok. Egads it is hard. My reading is that 120 days is the real window. I've made it through with 9 to spare! Despite ideal circumstances NOT, I imagine that starting chemo later is better than not at all. iworked on not bemoaning the might have beens, since my preferred one was to not get cancer at all. You'll both get healed enough to join me soon! -
Patalameda, thank you. That really does help. :-) Sorry for memory lapse but did you start chemo with an open wound and if so did it get worse or stay the same? Thanks. The faulty memory was here before all the stress. -
Virginia and Tonilee, I am also starting chemo (AC) next week. In fact, it will be Monday 11/18 so we will be in this together. I really don't know what to expect as it seems everyone's side effects are appearing at different times along the way. Tonilee, I was DX about a week after you and I still am in a state of disbelief even though I had a BMX 6 weeks ago. I have good days and bad as we all do but I decided to have some fun this weekend in spite of what is ahead. It may be the last time I will enjoy my favorite foods for a while. I found it hard to listen to people who want me to have a good attitude or say "you will get through this," because they are not the ones going through his! At is why these boards are so helpful because we help each other. I also have sought out other women who are survivors to hear how they coped and are still coping.
For those of you who are a few weeks ahead, are any of you working . My MO said I could but the more people I talk to it seems that I will feel too crappy most of the time. My treatments will be every other week. I may have to rethink the working thing.
I hope all you ladies are feeling better going into the weekend. I have a friend who went through this 8 years ago and she recommended drinking smart water because it has electrolytes. I stocked up on it but it is expensive, I got it at the wholesale store.
Best of luck to everyone. -
smrlvr- I did 4 rounds of AC chemo every 2 weeks my first go round. With that I only had a lumpectomy - not a radical surgery. I worked through my chemo... I had my infusions on a Thursday - worked from home on Friday - felt pretty crappy on the weekend, then well enough to go back in the office by Monday (in the beginning). It got harder with each treatment as it's a cumulative effect. But I usually never missed more than Monday - maybe Tuesday of work towards the last treatment. I also noticed a bit of a cognitive effect (foggy brain). But, working through it was totally doable for me. I also was able to manage my nausea with the meds they gave me- and my onc has promised the anti nausea meds they give now are even better than they were then...
I didn't really have too much of an issue with my appetite either....I guess I was just lucky.
This time I have been on medical leave since my surgery (double mx) and I don't plan on working through chemo. I have been with my company for nearly 25 years so I get 6 months paid leave- so I'm doing that this time....
Anyhow - we will hold virtual hands and get through this together!!!!!!!!
Not sure if anyone else is a chemo repeater, but feel free to ask any questions. This time around I was WAY more terrified by the double mast....the chemo doesn't scare me bc I kind of know what to expect (if that makes any sense at all)
Virginia -
I just wanted to introduce myself. I was on the Oct chemo board but since I had my #2 infusion Nov 13, I decided to join this one. My last 2 will be in Dec.
So far #2 seems to of went better then the first. They gave me fluids/water with my AC and maybe that helped some. No nausea. I am taking Emend, Zofran/Dexamethasone, Ondansetron and after these run out on Friday my MO gave me Metoclopramide for a back up if I needed it. With #1 I only needed to take a couple of them. I have fatigue and foggy brain. I notice I made some mistakes when I was typing this and had to correct them. I used to be very accurate when I typed not anymore... Hope that eventually will go away.
I am taking Biotene for mouth sores which seem to help. Colace for the big C. Pepsid for Heartburn and Tylenol for headache after I check my temperature.
I guess we will all be glad when this is over.
All the best to everyone that is going through this... -
Heard from dermatology and am now bra-less, gauze-less and using just Vaseline. Sounds funny reading that. Praying it works and trying not to get my hopes up too much. At this point I'd be willing to run around topless through the streets waving lighted tree branches and singing Bee Gees songs if that would provide a magic cure to get me in the Big Girl Chair... -
Wrenn, my wound is closed, as of 3 days before commencing! Still fighting antibiotic caused D, still weak as a kitten from the physical toll, lost 5 pounds in the week leading in. Oh well, gotta do it. I'm thinking of US Defense leader during the Iraq war Donald Rumsfeld's (not that he's my hero) comments that we go to war with the army we have, not the one we'd wish for. -
Thank you Patalameda, I'm glad it closed in time. I agree we have to fight. I am actually starting to feel a little more energy or optimism maybe. I saw the surgeon this morning and although my wound is still about an inch he thinks chemo is more important than healing the wound. He thinks delaying chemo any longer is more dangerous than having an open wound. So, will go for it. I have had contradictory answers to this point. We will do ok. -
Wrenn. It is funny the difference in MO's. I am the same as you. Triple Negative and Grade 3. My MO was on the border saying I did not have to take chemo if I did not want to. I was so confused as to whether I should take it or not. Then I decided at the last minute, thinking if it ever came back I would wonder if I had taken chemo if it would of helped. When you are TN there are not that many choice's out there and it is very agressive. We can't take Tamoxifan or Herceptin. My friend is Stage 4 with a lot of mets and Herceptin has saved her life. -
Found the lump 9/22. Got the results 10/28 while leaving port on a cruise ship. MRI tomorrow, port, bone density, heart echo, and hopefully starting the first round next week. A/C 4 times 3 weeks, then taxotere 4 times 3 weeks. Then surgery followed by 4-6 weeks radiation. I think I will do fine with the hair loss, if it happens. Went out with one of my sisters today and bought hats. Don't know if I can handle nausea though, but my oncologist has already called anti-nausea in to my pharmacy. Planning to take the rest of the year off. My doctor said that whatever I wanted to do, FMLA, short-term disability, whatever, she would back it up. Working during the silly season in retail while going though the first part doesn't seem like a good idea to me. Reading all your accounts is a bit comforting though. I think the doctors may think it's worse than it seems. Is chemo, then surgery, then radiation normal for a large mass? Staged at IIB supposedly simply because it's very large, not because they think it's spreading. I need to see some of the doctors without my husband, so I can ask the harder questions and filter the answers. -
Gia, It's bad enough that we have to wonder what is going on and what our outcome will be without hearing so many conflicting opinions. I'm not sure if it is because my tumour has two features or what the deal is but the onc has been really pushing me since soon after surgery to get started. It's good to hear that yours wasn't pushing it though. It makes me worry less about starting so late. :-)
Wallymama, Sorry you have to be here but it is definitely the place you want to be. Information and support has been a life saver for me from this site. Welcome. -
Welcome wallymama! You are hitting the ground running and sound in a good place. My situation is different but I've read many times that chemo, surgery, radiation is pretty standard for larger masses. -
hi all! doing well....bruised pretty well from port and sore. Didnt have any nausea to speak of. infusions and meds were uneven tful! felt abit fluy when I woke but took my regular pain meds and ibprophen so a bit better....just tired which is normal for me!!!!!!I have also take gaviscon and ratidine to take care of normal indigestion. gonna try some lunch as just left aftet my neulast a shot! will check in later w/an update! how is everyone! -
Hi Quirkygirl and Lizzy, I will call the American Cancer Society and find our nearest Wig bank. Quirkygirl, your wig looks great. I would not have known it was a wig if you hadn't told me. That is exactly what I am hoping for! We live In The country however I drove into town almost daily for work. Wish we had a Visible Changes near us, a free haircut would be wonderful right about now! Hate to pay for one when it is all coming out on the next week or two.
Smrlvr.....I have to work through the chemo and Rads so I can pay my insurance premium. I have been told it is not always easy but totally doable. I am trying to keep my life as normal as possible through the entire process. The closer I get to Wednesday the more the anxiety sets in. Just have to keep telling myself this to shall pass...... -
Fairydogmother,
I started jogging this summer, also walk up our Rib Mountain twice a week. Had my port placed last Tuesday and have not been able to jog since. My dogs keep looking at me the same time each day as if to ask why are we not going for our run? I so wanted to keep up with my walks and jogging as I love the results and the great feeling I get after a workout.m I swear I can already feel my muscles turning to mush,lol. Hubby has offered to buy me a treadmill however it isn't the same thrill as jogging outside. I am hoping with time I can start up again.
Pam -
Hi ladies,
If your ins. denies a wig contact The American Cancer society. I got a nice wig from them and a hat. I also got 2 bras, and qualified in 50.00 visa gas card. I did not have any luck as far as rides to chemo in case my friend could not take me. My boyfriend was in the hospital for about 5 weeks.
You also can sign up for the Look good, Feel good class and get free make up from The American Cancer Society. I took the class and was the only one so the instructor showed me all kinds of stuff.
Good Luck ladies. -
hello ladies, got the call today from MO and insurance is ready to go for chemo, start tomorrow now, wow this has been a rollercoaster. I have a script for ativan that I plan to take tonight so I can get some sleep. I'm ready bur nervous. I'm planning to work Monday after I get my neulasta shot, I'm a hygienist, so we will see how it goes! Good luck to everyone else starting tomorrow. -
Wrenn and Giaa-- I am triple negative too- I was Dx'd on Sept 13th and they pushed me to have the surgery ASAP (10/16). Chemo was always a given for me with the TN and as Gia said other therapies are not an option. Not sure if I was not given a choice bc I am having a recurrence??? My onc said that TN does respond to chemo very well (thankfully).
Mareluna- I signed up yesterday for the Look Good Feel Good class! The pple on the phone were sooooo nice. I go on 11/24 (a week after my first chemo). -
VirginiaNJ, Did you have chemo after your first dx? Yes I was told also that chemo works well with triple negative. Like you say there are not a lot of other options.
Welcome Wallymama, Nice that you got your cruise in before you had to go through all these treatments. It is basically a year out of your life. My MO told me to avoid crowds because my immune system is low and very easy to catch something. No travelling for awhle I guess.
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