Chemo in Sept 08
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PEnTE,
I had Dr Russi do my original lumpectomy! I loved him! He passed me on to a BS, Dr. Paulishak who works wih Dr. Sharon.He wanted me to get a mastectomy with immediate reconstruction cuz he knew I would have been a basket case otherwise. And since no PS at AFA, I moved on. She did my mastectomy and my port. It was weird, cuz the whole consent was typed EXCEPT for the collapsed lung part (which she told me was less tha 1%) which was written in by hand. I should have asked Dr Russi instead! I would definitely call over first thing in AM and get seen. I had 2 chest tubes for a week and was in Memorial. I actually work in Pediatrics at the new St. Francis Medical Center.... It will be hard and I will need to take time off if I don't feel good or if I think I will catch something I am hoping to do only siugicals , as they are "clean". My husband just retired from Peterson, so I am very familiar with the military.
Again, don't take chances if you are coughing. The difficulty in breathing didn't hit right away but I knew when it did. Please take care!
Maybe we can meet up. Who is your onc and where are you doing chemo?
Denise
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bunnyrabbit: re: Girl on the Go, yes they do have a website its www.girlonthego.biz They are centered around NY/NJ/CT area and I think that's where they do house-calls, but they will also do personal consultation via email (you send photo, hair swatch etc.) They are a bit pricey, though. But I figure i'll be wearing this for a year probably, so its worth it (and my insurance will pay a part of it.) The woman who started the company is a survivor and knows how traumautic wig-shopping can be!
I am definitely one who will wear the wig 100% of the time while out and about. I may even wear it in the house. I will probably take it off only to sleep!
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Adding bunnyrabbit and jc135. Also updating dates and tx's for Pattie and BrandonMom.
Wow, this list has gotten to be a monster!
Sept ChemoGals!
Sept 01 - FloridaMom TAC (Port placed Aug. 29)
Sept 02 - Jacuelyn32 TC or TAC
Sept 02 - kmg1015 TC x6
Sept 03 - 2z54 (Port and SNB Aug. 28)
Sept 03 - horselover A/C x4 every two weeks T x4 every two weeks (Port placed Aug. 29)
Sept 04 - SingaporeChris FAC
Sept 04 - Emily2008 A/C x4
Sept 05 - yuyueno TC x6 every three weeks (Port placed Sept. 29)
Sept 05 - BrandonMom A/C every four weeks / T every other week x4
Sept 08 - woorus 6 tx every three weeks
Sept 08 - Lili46 TC x4
Sept 09 - Tanzie A/C x4 two weeks between (Picc Line inserted same day)
Sept 09 - cjh
Sept 09 - HeatherL FEC x3 / TC x3
Sept 09 - lyn117 EC & F(5FU)
Sept 10 - theprettiestmess FAC & T
Sept 10 - bar62 A/C
Sept 11 - klfh tx x6 three weeks apart
Sept 11 - TheMissingWink (Port placed 9/08)
Sept 11 - oldlady TC x4 every three weeks -- final treatment something else
Sept 15 - Sue508 TC x4 three weeks between
Sept 15 - floridaeyes
Sept 15 - jc135 TCH every three weeks / H weekly
Sept 17 - Priz47 A/C (Port placed 8 / 28)
Sept 18 - kimy TCH every three weeks
Sept 19 - Juli50 A/C x4 every three weeks T twelve weeks
Sept 22 - tamyintexas
Sept 22 - bunnyrabbit TC cocktail of choice
Sept 29 - PEnTE (Pattie) A/C every 3 weeks
Sept ?? - Curlieqs
Sept ?? - bettysgirl FEC+T
Sept ?? - HopefulLady (Port placed 9/11)
Sept ?? - 6cooks T - A/C
You girls please let me know if I need to add, or if I've forgotten anything!
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Colleen (BrandonMom) My picc line is a pain in the patootie.
It's still sore,and I find myself bumping it a lot, since it's on the inside of my right arm. (And I'm right handed.) I tried taking a shower yesterday and ended up getting it wet, despite my best efforts with 'Press 'n Seal'. My SIL, who is a RN ended up having to change my dressings out. Hopefully things are going better for you!Curlieqs -- Even if you don't end up having to do chemo, please feel free to continue to post here. You're still welcome 'round here!
Whaaa! I know I'm just being silly, but I have been holding on to the 14 days before your hair goes rule. I called this morning to make myself an appointment for a hair cut. I've been putting it off, but no more. I mean, what if I turn out to be an over-achiever too?
I sat in front of the mirror with my 'hat hair', hats and scarves yesterday, and basically ended up having a pity party. I felt/feel so out of my element. I finally ended up using one of my daughter's ponytail holders to gather the scarves up in the back. Have to say, it worked alright, and definitely looked better than my sorry attempts to tie them!
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hopefulLady! I'm sorry and didn't add your tx update! I'll do it the next time I update the list, promise!
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Tanzie,
Did your scarf come with instructions? I haven't tried mine yet, but need to. I think I was in your pity party yesterday! It was just one of those days where I felt so down. maybe I'm just getting scared before the "big" day!
klfh, The MidssingWink and oldlady- How are you guys doing? Was it as expected? The fear of the unknown is awful! Hope you are feeling Ok and taking your meds!
D
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Yuyu,
Have you asked your doctor if you can take zantac? Sometimes the steroids can give you an upset stomach and zantac can help (lesson learned from my son's treatment, no one mentioned it to me).
Colleen
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Hi priz47. You are absolutely right that the fear of the unknown was the worst. It really wasn't bad, just a loooong day. Add a couple of hours onto whatever kind of time estimate that they give you. My worst symptom was a rotten headache. It felt like a hangover. I really dozed through most of it and had no trouble at all sleeping last night. I got up today and went to aerobics class. I was tired and feeling heavy, so I wasn't up to my normal peppy self. I took a nap after.
So the fatigue is really the worst thing so far. I am a little achy/fluy feeling too, but it's not too bad. I have to kind of force myself to get up and do things, but thankfully my two kids keep me motivated.
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Hi All,
Last night my left arm felt like someone was squeezing it so I went to the Hospital this morning and they did an ultrasound on the side where my Port was put in. They found that I had a blood clot starting to form in my subclavian vein. They proceeded to tell me that I have to start giving myself two injections a day of Lovenox and also I have to take Coumadin once a day. Has anyone else run into this problem.
Patti
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Patti,
I was on the Lovenox shots the whole time i was in the hospital for the collapsed lung. Mine was preventive, cuz only got one shot a day. Unfortunately that can happen! What's the eal-bad karma for us or what??!!?? How are you feeling now? Clots are serious soif you have more pain epecialy inyour chest, go the ER immediately!
D
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Forgot to say, I had chemo class today. Got list of what to lokfor, another prescription for nausea meds, this time for Compazine and for lidocaine cream for my port. They really pushed the wigs on me, but I am just not there. I did try some on, but....I am just anxious to get started. Has anyone had trouble sleeping? I have such terrible insomnia right now, was up till 0430 last night. Not a conductive schedule, that's for sure!
D
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Yes sleeping has become a lost pleasure. I find no matter what I do to relax myself I still have problem falling asleep and staying there. I'm trying to stay away from any extra drugs as I feel there is enough going into my body with the FEC and Taxotere plus the drugs to deal with those. Sometimes just getting out of bed and reading a magazine or writing down a shopping list helps. Other times I wait for the sun to come up and enjoy the sunrise with a cup of tea. If I can grab a nap during the day I do so. Remember "this too will pass, nothing lasts forever".
Just a question, has anyone else had severe bone pain with the Neupogen shots to increase your blood count? I've had a real problem with this. Any hints on how to deal with the shots? I have two more treatments of 1 shot every day for 12 days in a row to deal with. It's tough.
Take care
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Please post me Tazie.... I started chemo on Sept 8th...
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Please post me Tanzie.... I started chemo on Sept 8th...
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Hi everyone!! I just started TAC on Sept 8th. It wasn't as bad as I thought it would be. The nausea started probably about a half hour after treatment and fatigue did settle in. The NEULASTA shot was what did me in. Getting the shot wasn't bad of course, but the next day I felt like an ATOM BOMB exploded in my body... Did anyone else feel that? The RN did warn me, but I didn't think it would be that bad. I was on vicodin around the clock for about a day and a 1/2. I am anxious about the hair loss. I don't know when would be the "right" time (is there even such a thing??) to shave my hair down. Any suggestions?
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Carolbythecreek... I had a problem with the shot too!!! I am relieved that I am not the only one that went through that pain. IT WAS EXCRUCIATING! It brought me to tears. Vicodin helped for the first 24 hrs and then extra strength tylenol thereafter. They say it gets better... I hope so.
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Priane,
I think neulasta shot did to me, too. I was okay after chemo, then I got my shot the next day and I started with body aches all over and fever started. It got me so tired. I still can't figure out it is the shot or chemo. Do we really need to have the shot, I wonder??
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Priz47,
Hey Girl, sorry to hear that you are not sleeping well. Is that out of the ordinary for you? Do you think it's anxiety? Can you take anything?
I gave myself my second shot of Lovenox this morning. Hurt a little but not bad. Reading the side effects sure gives me the eebie-geebies
Scary stuff. But, I know it's necessary. I've watched too many Discovery Health shows about clots and other topics so it's not too much of a shock to me. I'll have my orientation on 24 Sep. Didn't know they brought out the wigs at this session. It will be interesting for me to see what I decide. Right now I don't feel that I would want one at all. But who knows how I will feel once they are presented to me.
How are you feeling today?
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I'm also going to start on the 24th. It looks like I'm going to do AC every 2 weeks for 4 weeks and then 4 treatments of Taxal every two weeks. No port, as I have good veins.
I'm a little concerned that maybe I didn't need this chemo, as my Oncotype score was a 14. However, my oncologist says that the Oncotype score is just one small piece. So, I guess I have to trust him.
Lisa
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Hi PEnTE and everyone,
Believe it or not this doctor has gotten worse...arrgh. He told me again he might refer me to the the hospital clinic if became too expensive to care for pharmacologically and medically. I'm listening to this idiot thinking I can refer myself thank you,
He is not happy with Medicare though I did tell him after I finished my first session of Chemo how upset it made me to hear him complain about Medicare's payment schedule. I am a RN and would sooner die than make a patient feel as uncomfortable I've felt this past week.
I did call Medicare and spoke with a wonderful person, who suggested I report him to the state medical association and gave me their toll free number. I've decided to call my insurance plan Monday and locate another Oncologist. I will report him later, maybe.
Medicare says any and all doctors who use the system should bill them. I am not sure why he is acting this way but I have to receive my treatment in a stress free environment. Thanks for all your support. This is my first experience with a doctor acting this way with me and I can only move on from him and get well. I appreciate that I had the chance to talk about my concerns here, to family, friends and a very informative Medicare representative these past few days since my treatment. Thank you again
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Lisa F, your treatment is similar to mine My son had chemo at 4 (Leukemia survivor), so I know first hand you can get through it. Don't go into it thinking you are going to get sick. I have seen all kinds of kids just literally bounce right through it. I think adults may make themselves sick, just anticipating what may be. Drink lots of fluids. I bring 2 liters of water with me. The trick is to get it in, and then get it out as quickly as possible. The thing about doing chemo is that they really don't know if cancer may have spread somewhere else that is just too small to detect. Chemo will flush the body and find any fast growing cells, even those just too small to detect, and kill them. Sounds good to me!
Tanzie, I heard the saran wrap thing, and it is was on my booklet from the manufacture, but I decided to try my own. I bought waterproof first aid tape. I also cut a freezer baggie and then sealed it around my arm with the the waterproof tape. Over that, I went with their suggestion of the saran wrap. Like you, the water got through the saran wrap, but it didn't get through my waterproof taped baggie. You may want to try it. I found 1 inch wide waterproof tape at Target. The only danger I could see is you would want it to not touch your bandage, or it would pull it off when you take the waterproof tape off. BTW, I had my arm checked and they found no clots, so they don't know why I have pain, but all in all, good news.
All, a couple asked about whether you need a neulasta shot. My experience with childhood cancer is yes. Cells in your bone marrow are affected by chemo. By taking Neulasta, you are stimulating your body to go into overdrive in producing those blood cells back. By coming back quicker, you are getting your immune system back quicker (white blood cells), as well as red blood cells and platelets. You probably feel tired because the chemo hit your red blood cells. Neulasta in the long run will probably make you less tired quicker. We should feel lucky, it used to be a shot a day for about 4 days (GCSF). Now with the new shot, you only need one.
I finally feel human again after a week. I don't feel tired, so I guess I get a week to enjoy before the next round of chemo. Chemo for me wasn't so bad, as I just felt tired. And of course on Tuesday I felt really, really down in the dumps. I'm thinking about planning a party the week after to celebrate each treatment done.
Take care everyone!
Colleen
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Lisa, my oncotype score was 14 as well and I'm doing ACx 4 every three weeks. I had a consult at Georgetown University's Cancer Center in D.C. and the onc there recommended the exact treatment my local onc suggested. The oncotype score is just one factor in considering whether or not to treat systemically. They also factored in my age (i.e. how many years away from menopause you are).
In the end, my onc told me that we should do whatever possible to rid my body of cancer this time around so I don't have to face it again. After much thought and prayer, I decided to go for the chemo and trust that I had done all I could to prevent a recurrence. Hard decision, but I feel it was the right one for me.
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Hi everyone! Sounds like you all are doing Ok.
Tanzie and BrandonMom- You can also use a rubber glove first, just cut out the fingers and pull it carefully over your PICC site, then use the baggie with waterproof tape. We` do that in the hospital to give kids baths when they have IV's.
Lisa-My onco type was also 14. I debated whether or not it was worth having chemo. I am glad I made the decision I did after hearing yesterday that my CA29 (or whatever it is called) is elevated. It was normal in July when I had my mastectomy and now is elevated. So I know I am doing the right thing.
PEnTE- Where is your chemo being done? I am going to RMCC on Circle and Union. The nurse practioner was very nice and knowledgable, gave me several booklets to read, one with recipes for high protein drinks and snacks. I read it last night ( when I couldn't sleep) and the only scary part was "Some patients find their weight does not change uring treatment. They may even gain weight. This is particularly true for BREAST, prostate and ovarian cancer patients...."
I did not want to read that! I will definitely have to be careful, as I gain weight easily and was excited to have lost 10 # since surgery.
I have a prescription for Ambien ans will have to break down and take it. Two nights in a row of being awake til 0430 is too much for me. i used to work 2 jobs till May, then worked up till my surgery date. The insomnia has been getting worse each week. I did ask to talk to the social worker abt relaxation exercises, so hopefully she will call this week.
We have 6 people starting chemo this week, including me. Good luck to everyone, keep us all posted on how you are doing. This will not be easy, but we CAN DO IT!
D
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I am to start on the 16th and I am also in a clinial trial. The drugs that I will be taking are a bit different. I will start with the AC and either a placebo or Bevacizumab (AvastinTM). Then they will put me on the paclitaxel (Taxol) and add another drug for 12 weeks. At the end of the 7th cycle, I get unblinded to find out which arm I am in. There seems to be an 80% chance that I will get the Bevacizumab since 2 of the arms each have a 40% chance or being randomly picked.0
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I would very much like to join you guys. I started TC on sept 4. Besides the wiredness from the decadron, the neulasta has been the worst. I am sorry to hear that others have experienced the "atom bomb" that went off inside as well. I was not expecting the pain that I had. the bone pain was bad but the constant gas/cramping was what took me for a loop. wasn't prepared mentally
How have you all coped with the discomfort? Am NOT looking forward to the next treatment but at least I know what to expect so that will help.
I must say, I turned the corner and felt somewhat normal 9 days after the tx. besides some mouth stuff, rash, diarrhea and mild fatigue, I feel great! geeeez looking at what i just wrote doesn't sound so good but in comparison to how it was a week ago.........
Patty
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LisaF,
My OncoType score was 21. I told myself that if I was in the single digits I would opt for no chemo. Well 21 is intermediate and there is now no doubt in my mind that I should have chemo. 14 is a tough call but if you absolutely trust your Onc then go with it. For me, I think having chemo will clear up any doubt in my mind down the road whether I should have or not. Remember, it's ultimately your decision! Good Luck!
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Dear Priz47,
Not sure if I already told you but I will also have chemo at the RMCC off on Union and N. Circle. 2 weeks and counting....I hope to work for these next two weeks before I start. Lately I've been eating everything under the sun! Mostly salt and sugar!! Normally I'm very conscious about what I eat and exercise. As for the gaining weight part...I really thought that loosing weight was an issue...who knows?...guess everyone is different. My biggest worries are loosing weight and strength. But like you said WE CAN DO THIS!!! It's only Temporary! I'm focusing on afterwords....getting back into shape and staying healthy!! I'm actually contemplating trying out for Ms. Fitness at age 43! That would be something! ....baby steps..
Stay Strong!
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Hi Patty (with a Y)
I'm Patti (with an I) LOL! How are you doing? I start AC every 3 wks for 4 months on 29 Sep. Thanks for sharing you experience. How are you feeling today? I only know what to expect by what I've read. I know that everyone tolerate's chemo differently but it's good to read and possibly know what to expect. I'm one who doesn't want anything sugar-coated. I want to know the hard truth! I've got two weeks until I have my own experience. I'm anxious, nervous but ready to get this started and over with! How often and how long will you have treatment?Hope you are having a good day! Hang in there girl!
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Well, I start tomorrow...just want to wish everyone well who starts this week. I took my first decadron today, and I was so afraid of taking it (see my post on "how much decadron were you prescribed for the full explanation) that I split the morning dose...half with breakfast--with a xanax-- and then half two hours later (both with food.) So far, I am not too wired, but pretty energetic...I just vacuumed the whole apartment in 90 degree heat! Its hard to tell if this burst is from the decadron or just general anxiety (the xanax is wearing off already...)
I am pretty freaked about tomorrow but at least hubby is coming to sit with me this first time. I am not so worried about nausea---I think between the Emend, Aloxi, et al it should be okay--but I am worried about possible infusion reactions, etc. Also worried about so many folks having severe pain with the Neulasta shot (which I'll go back for on Tuesday.)
Sometimes I think it would be easier if we didn't know so much beforehand
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Hey everyone Sorry to alofyou having dificulty with the Nuelesta shot. I read somewhre on these boards that taking Claritin heps with the al over body/bone pain. maybe give it a try. I was told i would only get it "if necesary" and it would be a week after the tx. Al thses docs are so different! i was amazed when the NP told me that breast cancer has the most options for tx and drugs than any other cancer. i wonder if it is cuz of all the trials. I will do a drug trial with Tamoxifen and whatever after my chemo is done.
jc135, Sue508 and Florideyes- Good luck tomorrow! Will be thinking of you all and praying for you! Wish you strength, you will get through this! I think the Xanax is a good idea for the night before.
I will not get Decadron till I go in for the infusion. We will see how that goes. I did take something to sleep last night. Fell asleep at 1:00 and didn't get up till 11:00! I cannot do that and work! So I will try cutting the pills in 1/4 and start slow.
I am planning on going out tonight with friends for a "before I start chemo" celebration. We are going for fondue. I love cheese and chocolate and want to expereince it again before my taste goes awry. Then I want to get a last pedicure before chemo starts. I also need to get my house cleaned and the dogs brushed. We have 5 acres and my one dog looks like she has dreadlocks, her hair is so matted! So lots to do in 3 days!
D
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