Anyone starting chemo in June 08
Comments
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Texasmom, I am at day 12 and I am noticing my scalp is very sensitive. If I scratch it, it hurts. So, I guess I am right behind you. Good for you to get the buzz done, I am planning on that as well. Let me know how you do.
Karen
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Hello,
I will be starting my first chemo Thurs June 19th. I will doing TAC. I'm a little nervous but reading the conversations helps! Any advice?
Wyoming
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Wyoming, I too will be starting TAC this thursday. You probably have already read a boatload of the posts like I have. mominaz is in our June group and has started, and I think sueper13 from the may group is on TAC. They could answer any specific questions I'll bet. I also think Jo-Ann from the June group is starting TAC later this month. Too many people and txs for me to keep track of. Good Luck. HunkyD
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HunkD,
Thanks for the info.
Let me know how things go. I'm a little anxious and I know this sounds weird but I also excited to get started.
Wyoming
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Wyoming...I had my first TAC tx on May30th. My 2nd tx is on Friday. I would make sure you have meds for both constipation and diarrhea. I was very constipated, but the woman who started TAC next to me on the same day was the exact opposite problem. I know you hear this from everyone but it is the best advise ever...DRINK DRINK DRINK. Just take a deep breath and let it happen. Good luck...
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wyoming - truer words have never been spoken on the boards - drink! I started my ac 2 weeks ago...my worst se's lasted 5-6 days, then went away as quick as they came -feel great on day 13
My head started itching around day 10 and my hair has been slowly thinning for the past 2 days...mostly on the sides. At this rate I should have a "high and tight" by the weekend. And, because I could, I buzzed mine before I started tx so I didn't have to worry about it - with temperatures in the 100's it was nice! There is a thread on prepping for chemo - that was a big help in knowing what to have on hand and what to do to prepare -check that out if you have time. And, if you have questions - ask -someone will be along who knows or can tell you where to find answers. Everyone reacts differently - according to my onc, most of my stuff has been the opposite of what most people get, so don't freak if you don't follow with the same side effects. Just check in here or with your onc if you are not sure of something. best wishes...Good luck to the rest of the june girls starting or going for round 2 this week...take care
bonnie
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Hi all I start the 19th also and I couldnt wait to get started now I am scared to death. I have followed everyone on tips and I thought I was ready, but now I feel like I cant breath. I will be on the A/C and the avastin trial. My dh is going with me help, but this is so unreal....
firebug
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Hey ladies!
My hair started coming out in gobs yesterday, day 15. My husband shaved it off. What a relief! I didn't realize how uncomfortable it was becoming! My head feels so much better. I definately need sun it's really really white! The scarves and hats are fun. Now, how do I get rid of these nagging little headaches?!
Donalee
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Hi Ladies, sorry it's taken me so long to write about my Anchorage trip to the Dr. I was not real happy with the Oncoligist office. I had my bloodwork done and everything is good except my RBC is low but they say they expect that. It is O.K. I also told them about the Terrible Throbbing Pains in my bones and the nurse that I talked to said it didn't sound like the bone pain and that I should have gone to the Hospital because they pain should be evaluated. She said it could be my heart. Next time she said go to the ER. I get to see my Dr. Oncoligist on the 30th and I hope she will look into it. I woke up on Monday and it was gone.
I also saw my surgeon. He is Wonderful byt is moving to the lower 48 this month. I will miss him. He said it sounded like the bome pains and that sometimes with each dose of Chemo the SE might get worse. He says he hope not though. He says I will have to have a Mamo after 6 months for a baseline. I don't know how they will do it unless all the pain goes away. He says they will allow me to heal after my 6 weeks of Radiation. Once I get through this 12 weeks of Chemo I am thinking Radiation is going to be like a vacation.
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Firebug.... you will be okay. Most of us have had at least one treatment and it is amazing how well you will do. Just make sure to take the s/e meds and drink lots of fluid before, during and after. We are all here for you.
Stickerlady, I hope it isn't true that the s/e's get worse with each treatment. I asked the May ladies and they gave different opinions but overall they said that the s/e's are about the same and tolerable.
Donalee, I am at day 14 after first treatment... so I guess it will start happening. Nothing today as of yet but then again I haven't touched my hair today.
Just so you all know, I went to the look good, feel better class last night. It is pretty good.. they go over skin care, makeup( which can spruce you up) and wigs and hair loss. There were about 10 participants at all stages of treatment and it was a fun time. I would recommend to anyone who needs a little boost.
Cheers
Karen
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KKing- Thanks for the support. I will drink and try to stay focused. I think just the nerves are driving me crazy. Just praying I get throught this first treatment. I will let you know how it goes. Thank you so much! hugs
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Stickerlady - I can't imagine how hard it must be to live so far from your oncologist. Did they ever call you back the other day when you called them or did you have to go to Anchorage to finally talk to someone? I don't think I would be too happy either with that kind of service. It is a scary time and you (or your insurance company) is paying them gobs of money to take care of you....and to listen to your concerns and problems as well as make you as comfortable as possible. I hope they do a better job in the future. Do you have a family doctor in the town where you live that could be a backup in times of emergency?
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Hi Ladies -
I had my 1st tx of Taxol + Herceptin yesterday (1st of 12 wkly tx's), which followed 4 dd tx of AC that I started 4/14 & completed 5/27. (I'm also in the April & May groups.) I consider myself one of the lucky ones who made it thru AC without any real SE problems, i.e., no nausea, just mostly fatigue. I gave myself Neupogen injections (8 days out of each 14-day cycle), without any problems - as far as actually giving myself the injections (& I tend to be a real wimp!) & also no bone pain from the injections. I had a Muga scan before my initial AC tx, & another one early last week, both of which had results high enough to permit me to go ahead with the tx's. Yesterday's tx went fine; they had me take 20mg of Decadron the night before tx & another 20mg 2hrs before tx, plus a Zofran (8mg) 2 hrs before tx. They gave me 25mg of benadryl by IV just before the Herceptin drip, & another 25mg of benadryl just before the Taxol drip. I had a nice nap at home afterwards! They told me next time to just take 8mg of Decadron the night before & 8mg 2 hrs before tx; big difference from the 20mg + 20mg! So far I'm not feeling any SE's from yesterday's tx, but I'm not sure what the cycle typically is for these meds, particularly the Taxol.
For anyone who's getting Cytoxan & is getting headaches on tx day, try asking for a slower drip, like at least an hour. And for those getting Adriamycin, yes, the ice chips really do help prevent mouth sores.
Best wishes to everyone for easy tx's & little or manageable SE's!
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Hunkydory, thanks. I'll be sure to let you know how it goes tomorrow. Good luck to you tomorrow, let us know how you fare.
Firebug1 - Did your onco give you something to take for the anxiety? If not ask for it. Your signature Firebug1 MD a physician or from MD?
Wyoming - Welcome to TAC you and Hunkydory start tomorrow - Mominaz will be having tx #2 on Friday - I'll start next Wednesday - I know what you mean about both the anxiety and the excitement. Good luck tomorrow.
Mominaz - I think you are our fearless leader - going into your tx #2 on Friday - Good luck and keep us updated.
Stickerlady - Hang in there - you appear to be doing great - but it's got to be tough being so far away from your medical team.
Donnalee and Karen - Both of you losing your hair. My hair stylist said she would do the honors once it starts to fall out. Karen sounds like the look good, feel better class had a lot of information and was fun to boot!
Tomorrow is port insertion for me.
Jo-Anne
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Texasmom, I never did get a call on Sunday and when I went to get blood done in Anchorage they let me talk to a nurse or NP and she said it didn't sound like the kind of bone pain I would usually get and that if it happened again I was to go right to the ER. I live in a small town 300 miles from a city and we only have 2 DR for 4,000 people. I don't really like either Dr. but if I have a problem I am hoping they will be able to get to talk to my Oncoligist and she will make all the decissions. I hate living here right now. I fly to Anchorage at the end of the month for my next Chemo.
We have no Malls, no fast food, no movies, only one grocery store and in the summer if you don't buy milk and bread by late noon you have to wait till next day when the truck comes to town. The tourist are all over town today because there is a cruise ship in town for 8 hours today.
It is BEAUTIFUL here but I miss my Walmart!!!!
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Jo-Anne - I am from Thurmont, Maryland. I didnt even think to ask for something for anxiety. Wouldnt that mess up my blood counts? They said they were going to do a blood work up on me before they do the chemo. I doubt I will get any sleep tonight been on edge all day today. I have to be there at 9am tomorrow. Been driving my family nuts. Thanks for letting me vent
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Hang in there firebug1. I will be right with ya in the morning. I too have somewhat aggressive txs coming up because of all the positive nodes. What are you getting tomorrow? Forgive me if you already posted your coctail. I am just curious because I am staged similar to you. I am planning on drinking alot tonight and trying to get some sleep. I wish the "drink" would be something a little more relaxing than water! Later..HunkyD
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Just popping over from the March 08 group to wish you all good luck in your journey and let you know you can get through it. I had my Chemo Graduation Day yesterday - woohoo! When I started in early March, June 17th seemed so far away and now it's come and gone and I am DONE. I had 6xTAC at 3 week intervals.
I know that you've gotten great advice from others who have gone before you, but here are some tricks that I picked up over the months.
As most of you have found out, the first tx is the worst, simply because you don't know what symptoms you'll have. By the next time, you can prepare and keep ahead of them. I started seriously hydrating two days before chemo and started popping colace the day before and it really helped.
Do the s/es progress with each treatment? Not always - one of my middle treatments was really bad as far as fatigue, hot flashes keeping me awake, etc. But for the other treatments, it just seemed that it took me a day or two longer to bounce back. The first treatment, I bounced back and felt fine by Day 8, and was able to even exercise a little. But for tx #5, I felt very tired the whole three weeks, and exercise hasn't been possible for the last few treatments. I'm looking forward to getting back into exercise - I gained 20 pounds of chemo weight all in my gut and nothing fits. My onc says that it's not unusual, and once I get back to normal exercise and eating it should come off if I work at it.
As for working, my tx day was Tuesday - I usually took off Tuesday and Wednesday, worked 4 hours on Thursday and Friday, did nothing but sit on my butt and supervise dh's work on Saturday and Sunday.
For the first few treatments I was able to work a full day by Monday, but for the last couple I could only work 4 hours. But by Tuesday, I'd have my one-week bloodwork appointment first thing, come home and rest for an hour, then go to work the rest of the day, and I could work full time after that. Fortunately I have a supportive work, and at home I have no kids or elderly parents to look after, and dh is very self-sufficient. He took over the pet care and house work, and most of the cooking and shopping, so I could rest. As for sleeping, after the first treatment when I got my Neulasta shot the next day, the onc recommended Benedryl and tylenol to prevent bone pain. The Benedryl had the side effect of knocking me out. I mentioned to my onc on my next visit that some nights I had trouble sleeping and had been taking Benedryl on those nights as a sleep aid and was that OK? He said as long as it worked for me and I took no more than the recommended dose, that was safer than a prescription sleep aid and to go ahead. He said that if I needed a prescription in the future, he'd give me one. I found that a good night's sleep was the best predictor of how I'd feel the next day, so I made sure to give sleep a top priority.
I bought a wig, but so far have rarely worn it. I'm glad I have it though for going out to a fancy restaurant or if we get invited to a wedding or something. Mostly I wear baseball caps, and I've bought a lot of dangly earrings to help fill in that space between my ears and shoulders. Goodwill has great earrings up for auction on their website - I picked up quite a few lovely earrings for very little money - one time I even snagged a pair of diamond/sapphire hoop earrings for $17! www.shopgoodwill.com
Best of luck to all of you, and may you all have a wonderful s/e free evening!
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HI everyone:
Tomorrow, june 19, I start the same as you, susans. 4 dose dense AC every 2 weeks. Two ladies from the support group have phoned me and we cried on the phone together. I know that crying dehydrates and I have been drinking water like crazy. which then leads to potty trips...
My new dil's mom and dad are gonna meet me at the hospital, since they live quite a way from me and the beltway is under construction. It is easier for me to get there on my own, then they will take me home. I sorta kinda had hoped they would drive me there, but ... I have my bag packed and will take the metro, which is very convenient, then the shuttle to the hospital. I did that for all my other appointments and tests, so I know how long I need to allow. They said they would be there for me, and I feel let down. Maybe that is my emotions working over time --- again.
My son will be back from his honeymoon Friday night and I am sure they are going to be gearing up to get back to work on Monday. Groceries, laundry, unpacking, sorting thru mail and bills, etc. I also do NOT want to come between them with MY needs. They need their time together. Of course, I did not choose this time to be diagnosed, but I did postpone the start of treatment until this week.
Thanks for letting me vent... I have had a pity party most of the afternoon and into the night. Now I am gonna have a snack of fiber rich cereal and drink some more water and try to get some sleep.
Good luck and God Bless. -
Natsfan...thank you for all the info. I did not get a wig because, well it's 110 everyday here in AZ. I still may though. I just shaved my head today so we shall see. I didn't even cry....yet!!!
Jo-anne, thank you but I think Natsfan holds that title. heehee
Firebub...My onco asked my like 6 times the first visit if I wanted something for anxiety. He repeated over and over if I changed my mind to call the 24 hour line and he would call something in for me. This crap sucks enough so they really try to do anything they can to help us get through it the best we can.
Take care everyone
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Texasmom, I am in the same position as you my head was very sore and sensitive I could hardly wash it. I am doing my second chemo today the 19th. My hair was coming out all over the place and leaving clumps everywhere. You could see big spaces where there was no hair so I also got it shaved off with the clippers but they do not go close enough I don't think. When I layed down at night it really hurt so prickley. I took my leg shaver and went over part of it and felt much better but I think I should get a plain raizor and shave it, would be more comfortable. I also got a cheap wig and it looks nice and is very comfortable.
Bonnie
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Stickerlady-Do you have someone in a larger town where you can stay just during your chemo treatments? (parents, sibling, or friend) I'm sure your husband would understand if you and the kids went to stay somewhere else just for awhile. I don't remember if you are going to have radiation too, but that is an everyday thing.
I noticed that you also had an acid reflux problem. I hope the doctor gave you something for that. I have it even when not doing chemo but that made it so much worse. My stomach pain was one of my worst problems. My doctor said I could take my prescription medication twice a day (morning and night) if needed plus an over the counter medication for acid indigestion if it wasn't in the same class as my prescription meds. The types are antacids, H2 receptor antagonists and proton pump inhibitors. I think the proton pump inhibitors are usually the ones that need a prescription. I am going to try to be more prepared for that SE this next treatment.
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I got the bone biopsy report on Tuesday June 17. They were normal. My Onchologist told me about the reports and advised to get chemo (-AC)right away.
I was not expecting it at all. But surprisingly since I was reading this site I was prepared I guess.... I went ahead and took it...
So I had my first chemo on June 17th 2008.
So far so good. Next day I could go to work and after work I went for injection.
Now i am scared though...
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Texasmom, my husband is in the Coast Guard and we are stationed here until next year. During my treatments I have a Hero's Home to stay in at Elmendorf A.F.B. in Anchorage. I am very lucky for the YMCA because they are the sponsers of this Wonderful idea to have these Homes available to injured Soldiers for their families who are getting medical help. I have the house set up for every one of my treatments and my 7 weeks of Radiation. My husband is going to Chiefs Academy in Aug. Sept. and I may have to start Radiation on my own but would prefer not to do anything alone. I will if I have to though. I have met 2 people in Anchorage so I do have someone that can look in on me from time to time.
I have an appointment with my On. Dr. on the 30th and I am abolutley going to ask about a stronger acid reflux med. for next time. I don't have a Gallbladder so I already have lots of problems in that dept. I'm sure she will give me something stronger. Thanks for reminding me to put that on top of my list of stuff to ask.
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Bonnie or Mominaz.... you mentioned about your hair loss. I am at day 15 after 1st treatment.. If you can beieve a friend of mine from work is going through exact same as me. She wants us to go tomorrow to cut the hair off and get the wig sorted out. Do you think we might be doing it too soon... she is very anxious as she has a function coming up. My scalp is very sensitive and sore now. We are still discussing it today.
Kiya... so u are feeling okay... that is really good...what is making you scared now???
Natsfan... congrats that you have finished your treatments.... your staging is the same as myself..pretty well.. are you doing radiation as well>??
talk to you all later
K
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LeftyAKANancy -
By now you've probably had your treatment or are there right now; my thoughts are with you! From what I can tell, we live in the same general area - northern VA/DC suburbs? Where are you getting your treatments? The anxiety before the 1st tx was the worst for me, just not knowing what to expect or how you'll feel after. Hang in there, you'll make it through this... You've got lots of company on this journey!
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Well.....haven't posted in a while........I've tried staying off the board for a week........kinda like a vacation from cancer......It just feels like I've been sitting around waiting for this sh*t to spread......that cancellation that they assured me would come up......didn't......so Monday I will finally meet my onco.......better not have too long a wait to start or I think I will kill someone.....had a lovely experience on Tuesday.....Doctor recommended that I have genentic testing.......because of my age......had my phone interview with the genetics counselor.....was told that the cut off without a family history is 35.....but as I am only 36.....she said no problem.....you should definately get the testing....it'll go through......made the 3 hour, rush hour drive to Toronto.....husband took the day off work.....only to show up and have the same girl say......I'm sorry but my supervisor said that we can't offer you the testing....because you don't quite meet the criteria.....we'll bank your blood though before chemo incase regulations change......or you have a reccurrence.....then we can do the testing......pardon f-ing me?.......but isn't that too late?......needless to say I was furious.......have put many calls in........so we'll see what happens.......anybody else been told they should have genetic testing....but then been denied?......good luck to all......can't wait to join all the Junies finally.......talk about a morbid thing to be looking forward to........
Jax
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KKing - wow, we do have a pretty similar profile, don't we? I'm just 4 months ahead of you on this journey.
Radiation is still up in the air. I've had one consult with a rad onc who said that his hospital routinely offers rads to all pts who are node positive, even just one. But he really couldn't give me any facts/figures about how my case fit into the studies he was citing (and I'd read the studies and much of them don't apply in my case). Also, when it came to discussing potential risks, he didn't even mention lymphedema! I don't think he looked any further at my case except to see the one positive node, and didn't do any further evaluations to see whether I'm a low, medium or high risk. I've done a lot of reading in medical journals on this, and from what I've read, I'm low risk, which means a relatively low benefit from rads compared to the potential harm. He seemed startled that I was familiar with the studies he kept citing, and seemed to get very defensive when I started asking questions and never really answered them. Needless to say I wasn't impressed!
I have a second opinion Monday with another rad onc recommended by my med onc, so we'll see how that goes.
Isn't it nuts that as laypeople we have to start reading medical journals and papers in order to make sure that we're making good decisions? I've learned that you have to be your own advocate in this medical world.
If you're interested and when you're ready, pm me with your email address and I can send you the studies I've found.
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NatsFan -
Just my 2 cents about rad. I had one positive node too, and all 3 of my doctors (genral surgeon, plastic sur., and onc) said that it's standard protocol (at least in the Portland OR area) to give radiation if you have 4 or more positive nodes. I felt relieved that they did not recommend radiation too.
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Concerning the rad treatment. When I had the lumpectomy done with the lymph nodes... the surgeon said it was standard practice to radiate the area. I have not seen the rad doctor yet, so I don't know what he would recommend. So, do you both feel okay if you dont get the rads??? I thought it would be another step to make sure everything is done.
K
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