Starting Chemo January 2015

Hello Beachbum. Thank you for your kindness. I hope to feel better soon.

How did your MO appointment go today?

Ladies, what meds are you being prescribed to treat nausea and are they working?

Hi Ladies!

Just wondering how strict your MO is about keeping you "on schedule" for your chemo treatments? Here's why I'm asking. My last tx should be on Friday May 8. The following week my son (a freshman away at college) is set to take off to study abroad in Qatar. He leaves the last day of his finals...so no time to move his belongings out of his dorm. DH and I would like to drive (only 4 hrs) and bring home his things that weekend (and of course see him before he leaves!!) but I am scared that I'll feel like #$%^ and not be able to go. Soooo...I was hoping to move my appointments up by one day each week, giving me a little more time to recover. But, after talking to my MO's assistant, she did not want to do that--not because of treatment problems, but because of insurance possibly not covering if done sooner than the recommended time. (Thank God I found THAT out!) OK, so I was thinking maybe I could move my appointment from the usual Friday to Monday. Haven't asked about that yet--does anyone else have a little flexibility with their days, would postponing three days be a big deal?

--Lorie

Ok…I'm such a doofus…I should've caught up on my reading before posting and read dstar, Marjo AND Brandi999 got a week off, so maybe I can too!

Beachbum, glad you were able to get a month off. I read about your work schedule during chemo with my mouth open! (Seriously!)

Thanks Noor—I sure hope my MO will go along with postponing just for my last one.

Stillstruggling—I am taking promethazine 25mg for nausea and it's working great for me. Never had any nausea.

Oh, I also had a "rash" on my face. It looked like a horrible case of acne, but up close it didn't—had little tiny bumps that were liquid filled. I called MO to see if I could use hydrocortisone on them. She said no and called in Rx for an antibiotic called Metronidazole 1% topical gel tube. After just two applications my face was totally clear.

--Lorie

Wrmbrownie – sorry to hear you have been dealing with those strange rashes and hand peeling.I hope chemo 8 went well on the 20^th and now only 4 to go!!That is definitely the good news part!!

Dstar – yah I love it when they tell you something you are experiencing is rare!Is that supposed to make us feel special?? I would pass on that if I could ha ha ha. That's great you are getting a week's break to regroup.Hope you really feel the benefit of that!

Brandi - I hope you get the redo with the disability lady if needed.I just spoke with my disability guy on March 13^th and I think I will be good until late August/beginning of September because that is what my MO gave as the return to work.What did your MO tell disability about that?Surely that counts for something without them hounding you in the between time right? Sometimes these insurance types can be difficult to deal with to be sure!Sorry to hear of the FLMA issue in your state too? Don't get what people have a problem with that for!! Congrats to you too for the break the no redo! That's cool!!

Tennisfan – I have had similar issues with my neutraphils and since I was on a 3 week schedule, I don't get Neulasta either (honestly with all the pain issues people experience with that, I was a bit relieved about it).I asked what I could do better or differently and they told me there is absolutely nothing that can be done to help the neutraphils.The good news is they came back up a 1 to 3 days later significantly.They are unable to explain why some cycles have been different.I have just learnt not to get frustrated about it and to take my delayed treatment as is.It was a great idea of yours to keep to the same schedule just a week later and good that your MO was flexible about that! I didn't think that through so I have buggered up my schedule somewhat.Ah well...I hope you are able to continue with your tennis after you begin Taxol.That's a tough haul on the testing and Herceptin drips but I do like the fact they will be watching you closely for 10 years. Hope you are having a great week leading up to Friday this week for your last AC!

Mommacat4 – I hope you have mentioned that pain in the balls and heels of your feet!I'm bet you have but Taxol is much tougher on the possibility of neuropathy so they should be made very aware of any issues you are experiencing.I have that nail sensitivity but they seemed less concerned about that because it isn't a tingly pulsating pain more like a bruising.I can see discoloration in mine but they are still intact.I keep mine short like you do and it does seem to help.I get that runny nose thing too but not every day and not all the time.It will come on without notice though and can be annoying!I hate rubbing at my nose too but I don't find blowing does anything either!I do have a product called Nasogel which I put in the nostrils. I imagine Vaseline may help too.I just hate how it can run down my nose without given me time to grab a Kleenex sometimes!

Jlstacey – glad you are feeling better this week.That's exactly what I do too, when I'm feeling good I try to take advantage of it because when I'm feeling bad, I don't let not doing things get me down.I just take it one day at a time.For me, I get less irritated this way!I haven't had the spots issue that you are having but now I seem to be having an issue with my steroid medication – dexamethasone.I am all red in the face tonight.I took a picture of it so I can show my MO.I thought it was the Ondansetron/Zofran causing this so I didn't take it this time.ODD!!!I hope you are getting the help from your MO concerning depression/anxiety issues.These can make a tough rough tougher and they are supposed to help you with that, right?

Sweethope – sorry AC kicked you to bed!Hope that will be the end of that for you since that was your last AC! Sorry to hear that your MO isn't following through for you on the PT therapy.How can this be resolved now?Hopefully they can restore some faith as you have come a long way with them already.I know for me I don't connect with my MO on a personal level but I have so far gotten everything I need, I think!

LCH033 – I just wanted to pass along my good wishes for good results from your echo on April 2^nd.You absolutely can come here and whine/vent!This is the place!!So hope that Taxol gives you an easier time.I have been very fortunate that my chemo hasn't given me the nausea issues many of you have experienced on AC.I wish I had some kind of solution for you all!Beachbum's advice about trying to hydrate is great. It is tough to do but such a must.Hopefully some of her suggestions are ones that you will find can work for you. I drink between 10 to 13 cups of water a day and I truly believe that has helped me with nausea as well as eliminated any problems with sores in my mouth.Sometimes I find it hard to believe with all the water I drink that I can still have such dry skin though.Goes to show how wicked this chemo is on our skin and nails! This is also in spite of the ton of moisturizer I use as well. I'm not an expert on lymphodema but the 3 things I remember to avoid are having blood taken from that arm, sun exposure and mosquito bites.The blood one is easy to control but I'm a bit worried about the other 2 when summer comes.Mosquitoes can be very bad here and they seem to love me. I heard Benedryl can help with that as mosquitoes don't like the anti-histamine in your system. I was even thinking about getting an arm sleeve to keep that arm covered up in the summer. Not sure if that is viable but have to remember to ask about it.I also heard you need to have one of those when you fly. Not sure why yet but I have to remember to ask about that as well sometime down the road.

Cheryl – sorry to hear you have experienced a downturn in Taxol SE's.I'm not sure if it is the same reasons but I experienced exactly that on Taxotere.Unfortunately it went on for a week with 5 to 6 trips a day then gradually got better.I stayed away from dairy products for most of that but then remembered to eat some bananas towards the end.That sure helped I think and the amount of trips lessened within the next week after that.Somewhere I read that some people took Imodium but to be honest I seem to take enough "crap" now I hate taking more medicine and definitely wouldn't do it without checking on it first. Hope you get some relief soon!Hope everyone has recovered from the horrible colds you experienced as well!

Beachbum – I glad you at least have postponed a decision until April 28^th and I hope you can convince your MO to give you the break you need without too much of a fight then.

Loriekg – Did your MO say what was causing the rash?Glad they found a solution for you though!I hope you are able to move back the last tx to Monday at least.I can sort of understand not being about to move a bunch of TXs but it has happened to me twice now because of health related issues.So maybe moving only one shouldn't big problem!I wish you the best of luck with that!!

Noor46 – congrats on starting Taxotere today!Those steroids are a bit of a bugger for sleep to be sure.I did have bone/nerve pain start on the3rd day following chemo last time (late on Thursday night and worse on Friday, Saturday and Sunday) Thistime round they gave me Codeine to deal with that as extra strength Tylenol and Advil were not effective at all.I hope you don't experience that but thought I would throw out what my MO gave me.I'm still hoping I don't get it this time on Taxotere #2.

Speaking of Taxotere#2/Chemo#5 which was originally scheduled for me today, this was postponed until tomorrow as they were unable to get blood out of my port today.I had to go for an x-ray to ensure the port was still positioned okay (it was thankfully) so they determined I had a fibrin sheath on the port which had to be dissolved with TPA – (Tissue plasminogen activator).That took about an hour.At first it wasn't working when they checked it again even after they had me cough and moved my arms alternatively up and down on each side.She went to get another syringe of TPA but when she touched the syringe still in me – poof the blood came out.Hallelujah. So it is clear now for chemo # 5 and I hope, hope, hope that I don't have another issue with it as I only have one more chemo to go – tentatively scheduled for April 14^th. Here's another example of something that would have totally frustrated me even a couple of months ago.I wasn't happy about it obviously but I didn't get upset today.I am learning! On the plus side, my sister was visiting from Calgary and took me today but since I didn't get chemo – we went out for supper!!That was real nice!!

Again wishing everyone success with managing/controlling SE's this week. Sorry for the long winded post though.

Take care everyone!!

Wendy

Thank you everyone for the anti-nausea advice. I am writing the names of the meds down so I can ask my MO about them.

Beachbum, oh my goodness more chemo. I understand your disappointment, but you are one of the strongest women I know. You have already accomplished so much. Do you know what type of chemo you will be taking this time? AC it is supposed to be the hardest and you can't have that so hopefully the new mix will be better than the old one.

Thank you LCH. I hope the MUGA goes well too. I wasn't worried at all they found a suspicious spot on my mammogram and look how that turned out so I am concerned. I hope your ECHO goes well.

Sweethope, i thought i was the only one who was not satisfied with my MO. I read about the other ladies' MOs and I am upset that mine is not providing the standard of care the others are. I have had extreme nausea. I call her office and she calls in the exact same nausea medicine that I have been taking without relief. She rushes through appointments and seems overbooked and overworked. I really never get good answers to the questions I ask her. Since I only have two chemo infusions left, I have decided to stay with her. And frankly, I do not have the energy to find a new one, transfer files, etc. I am sure you will make the decision that is right for you. You are not spinning in circles. It makes total sense.

Dear Sweethope,

I vote for switching to the old passionate doctor. You should NEVER feel weird describing anything. They should empathise. I would certainly tell her but also insist on switching. It is your body, and your right.

I have had so far just a wonderful experience with my onco team. When the radiation department called, I looked up my rads doctor like I did for everyone else. ALL reviews were negative on the web, so I immediately called and requested a new doctor, to ensure that I would still have the best care for me, especially emotionally, so I want someone who listens, not someone who, in my case, was never available to answer patients.

You go girl!!!

Marjo

Thanks Lorie. Great idea. I made an appointment with the PA for Monday, April 6, right before my next chemo infusion. I am going to take all my anti-nausea meds with me and discuss them with her or him, I'm not sure. Ladies, I wish us all a good, resting, and peaceful night's sleep and a tomorrow free of all SEs!

I am taking in everything everyone is posting but I am having hard time remembering it all to respond. I guess that is chemo brain for you.

SweetHope- I'm glad you got the PA appointment. Ativan, which is an anxiety medicine, has worked best for me for nausea. Ask about the Sancuso patch too. I had that for round four of AC. I put it on the day before chemo and kept it on until four days after. It did help.

Loriekg- my eyes are watering too and it is driving me nuts. My MO said it is probably due to Cytoxan.

My nail beds on my fingers have started hurting. So far, it is my middle finger and pointer finger on my left hand, and my middle finger, pinkie and now my thumb on my right hand. It started a couple weeks and gradually more and more nail beds are hurting. It makes me worried about Taxol.

I hope I don't get nausea on Taxol. I've already lost thirteen pounds, and will continue to lose a little because of the taste buds thing. Grapes are the only that actually taste good. Maybe I should buy a truckload of grapes?

I start Taxol tomorrow.

Oh- this is really sweet. My daughter's Brownie troop is taking some of their cookie money and making a charitable donation. They have decided they want to donate to a cancer charity in my honor! I picked the American Cancer Society. I'm going to talk to the girls tomorrow night about how ACS has helped me personally.

Wish me luck with Taxol SE. I hope everyone has a wonderful day tomorrow. For those still suffering from AC round 4, I'm so sorry. Thinking about you all and hoping for the best.

PS I have now decided on a double mastectomy.

Jena

Hi my dear friends,

I had taxol #1 of 12 today. I bought two large ice packs and two medium that are flexible and gel filled, and wrapped my hands and feet throughout the infusion. at the 30 minute mark switched ice packs so I was sure to have really cold packs in place. It was tough but I managed it by pulling hands and feet out periodically. This was to,prevent neuropathy, similar to the cold cap theory.

I am taking 1 gram glutamine in water three times daily,B1, B6, and B12. MO approves. She is not a fan of Vit C so had to give up my orange E mergency , wah. If I do get neuropathy I will know I did everything in my power to prevent it. Now to slather on salve on my hands and paint my nails with tea tree and Butter of London horse tail strengthener.

I am critically neutropenic so I am on house arrest. Feel tired but no nausea!

Love to you all

Kristin

Kristin, so nice to hear from you! i don't think I'll have the courage to upice my fingernails... Good on you!

Jlstacey, good luck with first Taxol tomorrow.

Loriekg, I had made a mental note of asking if anyone else had a runny eye - it's been non stop for two weeks but I thought it was because of the cold, when I walk to the subway in the morning. Mine doesn't twitch but I wanted to rub it all the time for several days as it was itching. I thought maybe my eyelashes are growing back - I did not notice how many I lost because I never had much of them in he first place. My eyebrows have thinned but I noticed regrowth there too...

Stillstruggling, I took prochlorperazine 10 ml when the going gets tough and the nausea stopped within 5 minutes. I mentioned in another post that my MO also prescribed them in suppositories in case I couldn't hold the pills down. Maybe worth a try? The one thing I really remembered from December and November girls was why suffer thru SEs if something can be done so I know it's not what you are trying to do but trying to be brave and not take medsjust makes us weaker physically and mentally so I really hope you will find something that will help you. Hang in there!!!

Marjorie

Welcome U4iachic!  Sorry Round 3 of TC has been so rough for you. I also had a rough time Round 3 and ended up having to delay Round 4 for a week. But #4 finally happened and it has been much easier than #3.  I hope your #4 is easier too!.

Your fears are very normal, but I hope I can help you worry a little less.   Muscle aches and pains seems to be a very common SE of TC.  But I've also heard the Neulasta shot can cause deep bone pain, so maybe the Neulasta is to blame for some of it. I also experienced one instance of feeling like I was going to pass out, the twitchy watery eyes, and days where I had aches and pains from my teeth to my toes!  Maybe it will calm your fears if you think, if I didn't have these pains before chemo, then it's very likely they are being caused by the chemo.   I also worry about my positive nodes, but my BS and MO both seemed to take the positive node issue in stride and remained confident in their original treatment plan, positive nodes notwithstanding.

Take care,

Cubbieblue

RV6Gal, just a warning, my feet are STILL peeling. I peeled again in all the same places as before and some new places now. It is just crazy. Doesn't hurt at all but let's just say if I went in somewhere for a pedicure they would probably kick me out thinking I had some kind of crazy fungal disease. Gross!

Today I had more energy than I've had since I started this whole thing. It felt like I was on caffeine or something. Really awesome day! Also I met with my plastic surgeon who said I look great and that most of the ladies in my position look pretty beat up and run down. Next time I have an appointment there I'm coming with cupcakes for all of them. I just love that place! So amazing. Just in case you guys forgot, they are doing my surgery for free! Plus the doctor is so nice and his bio totally wowed me.

Saw MO today and she told me that my eye twitching is caused by fatigue. I did make an appointment with an ophthalmologist for next week, although the tearing has gotten better. But MO said the tears would probably be back and may get worse so she recommended I keep my appt and that the dr may put stents in my tear ducts which may prevent any long term problems. (I'm thinking my tear ducts couldn't be blocked because I can certainly cry tears at the drop of a hat.) I looked online to see what would be involved with this procedure and read this:

The tear ducts don't produce tears, but rather carry away tears, similar to how a storm drain carries away rainwater. If a tear duct is blocked for any reason, you may experience watery eyes.

OK...am I the only one that thought that tears came from your tear ducts?? This makes a lot more sense now!

PMR53, please be kind to yourself! You have been through a lot. It will be a while before you can bounce back. I get the same thing, "so you are all good now"? No not so much. I had chemo, surgery, and finished rads two weeks ago. I'm 10 months of procedures, treatments, etc. so no not so good. More like exhausted, and I have chemo brain. Chemo doesn't just go sway overnight. Some of the side effects linger, and others are permanent. I know that all too well.

So be patient, but I do wish we could all just flip the off switch, and move on. I know that can be hard when we still have plenty of things to do going forward. I hope you have a great evening! Feel better soon.

Hello Ladies. I am on day 10 after chemo and the nausea has started to subside. Thank God! I do take emend during the infusion and for 2 days afterward. When I stop taking the Emend the nausea starts again. I am going to talk to the MO's PA about it on the 6th immediately prior to my 5th chemo infusion.

Thank you thecolorpurple. I can't take compazine though. I started with that one and it literally made me crazy; it can have a very negative psychological effect on some people and I am one of those lucky ones.

I am heading into my third week which is (usually) my best week. I hope it will be this time too.

How is everyone else doing?

Lorie, are you going to go see your son? I hope it works out!

Beachbum, how are you?

My husband just came into the room and I told him I was talking to my warriors. Ladies, i hate this journey but I am so thankful that I found all of you to walk, crawl, run it with me.