Anyone starting Chemo in August 07?
Comments
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Hi All,
Every time somebody says something about their DH, I totally do a double-take because those are my initials! My poor brain gets a little confused sometimes until I realize that people are NOT talking about me, but about their spouses! Very funny.
Kimmie! I'm so glad to hear from you and to know that your week of tests are done and you've got a plan for moving forward. I hope the new drugs do their thing for you, but its good news that most everything is still inactive at this point. Bad news that you aren't getting the support you should, but know that you are loved by all of us here!
One week of rads down! I can feel a little bit of "heat" sort of from that area but nothing too major yet other than I can feel those muscles are a little tighter. I'm just trying to keep 'em loose with stretches and keep that implant from traveling north!
DeAnn
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Hey All,
I've been having a problem getting logged in for a few days, don't know what that was about.
I had my sim tx on Thursday and my first rad tx yesterday (Friday). I was on the table 'in position' for almost 50 minutes for the simulation. I was pretty much in agony the entire time. My left arm especially with 2 surgeries in the same area. Knowing this would be hard for me I asked the tech if it got to be too much could I get a quick break. She was nice but emphatically stated that if the sequence was stopped it meant we had to start from the beginning. I got through it but cried for 30 minutes after, I was in such pain. One of our posters on the Feb. rad tx forum just recently posted that before her simulation started the tech told her that if she needed a break with her arms just to ask. Please tell me what you all were told on your sim day appointment. I just don't know what to think.
Kaye...I know you're having a great time in Portland with that wonderful daughter. Be sure to tell us all about it. I spent 6 weeks in Portland about 10 years ago for some special job training....what a beautiful part of the country!
Kimmie...So glad to hear from you and know that you're ok and getting answers girl! Also glad to hear that you were able to get out to see something outside the hospital scenery.
Sorry you have to put up with the other crap from your traveling companion....you neither need it or deserve it. Keep your chin up and keep us all in the loop. Nash...Mama's home...Yea! What an ordeal that was. I believe she has one of the strongest spirits and wills of anyone I've ever heard about. What a lady. Girl, you have the right genes in you! Hope the latest chemo will do all the right things for her.
DeAnn...Way to go with one week of rads behind you. I'm breathing down your neck but still a few days behind. What kind of exercises are you doing?
My best to all,
June
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Hi June,
I'm doing some of the yoga poses that I've learned over the years that help to open up the chest. One that really helps is if you lie on your back and bend your knees, with your arms out to your sides in a T shape. You look one direction, but lay your knees down towards the ground in the other direction. This helps sooo much to stretch out those chest muscles, plus it helps the back too. I also do lots of other yoga poses. It has helped me tremendously to recover full movement from my surgeries. I was in a lot of pain after my first simulation too because it was only a week after my implant exchange surgery. I had a vein thrombosis that was killing me, but I was also told I couldn't bring my arm down without goofing up the measurements. In the following week, I worked at it a lot to stretch out those muscles and veins, and it really helped.
Once I actually started, the arm was much better. The first session is the hardest because they have to do all those measurements and it takes longer. By the 5th one, it goes pretty fast.
DeAnn
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Happy Dance! Happy Dance! I've finished radiation. Thanks to all of you being here through my journey. I'll be reading and checking on all of you.
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Congratulations, Monkey Girl. Way to go!!!!
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June,
I just finished radiation last week. I went through the same simulation problem as you and I cried all the way home also. It was agony. They told me I couldn't move either. But tx itself is much easier. Good Luck.
Hugs, Jackie
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Way to go Jackie and Monkey girl!!!!!!!!!!! Im so happy for you both.
Im still in Texas, my DH went home today. It was our original scheduled flight and he went on and Im here till Wednesday. He offered to stay on with me and I told him "No way, You've been mean to me this whole trip! Go home Im better off alone than having you here being an a**hole" Je apologized and I took him to the airport.
So its kinda lonely but its better than having him being nasty all the time.
Tomorrow Im going to Galvastin beach again. It's supposed to be 75 degrees!!!! And it will help me pass time.
Did I tell you guys Im getting my first neulsata (sp) shot on Tuesday? How did they go for you? I know my platlets are low but every time they stick me with a needle I get these huge 2inch by 2 inch black and purple bruises. They kinda scare me.
Hope all is well out there.
Hugs
KIm
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Hi, girls!
Yay, yay, yay--major happy dances for Monkeygirl and Jackie! Congrats!
DeAnn--Thanks for the exercise info--very helpful. I found stretching really, really helps the muscle pain from rads, and I can't wait to try the yoga stuff you suggested.
June--I'm so sorry rad sim was so tough--I can't remember if I was allowed to switch positions, but I don't think I was. I'm pretty sure you have to stay still the whole time. Mine only went 30 minutes, though, and I was 5 months post-op, so I can only begin to imagine how you felt. Yikes. Jackie and DeAnn are right, though, the real thing will be a lot easier. <<<hugs>>>
Kimmie--the beach sounds awesome--I'm really glad you're getting a little relaxation in. I found the Neulasta gave me a lot of bone pains and aches--sort of a flu like reaction, although some of it could have been from chemo. Even my lymph nodes in my neck hurt. I found Neupogen easier to tolerate, even though I had to have several days of shots in a row. That's not to say you're going to have the same reaction, though. I don't know about the bruises--could just be from the low platelets, or maybe it's how the nurse is administering the shot. Some have a better touch than others. Anyhow, you are in my daily prayers.
Kaye--hope you're having a wonderful visit in Portland with your daughter! When my mom and I lived in different states, I remember how much I looked forward to and enjoyed our visits.
Hugs to all!
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Kimmie
Hey... Just wanted to chime in here, to let you know that for me, Neulasta shots were MUCH more tolerable than the Neupogen shots! First, you only need to get ONE Neulasta, the day after chemo. You have to get FOUR Neupogen shots, starting about 10 days after chemo... and the Neupogen shots gave me Terrible lower back pain, for several days!
Also, just so you know, my onc. told me to take ONE Claritin each day, for three days after getting the Neulasta shot. It helps with bone pain you may have... I had almost no pain with Neulasta shots. I did feel just mild aches and flu like symptoms, but that was all... it was really not bad... not like Neupogen.
That is just my 2 cents!
Good Luck! I'll be thinking about you!Hugs
Harley
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Harley--isn't that funny how we all react differently? I wish I'd known about the Claritin trick when I had the Neulasta.
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I wish I knew about the claritin also. That would have been great. I got a lot of bone pain and aches from the neulasta shot. I didn't get black and blue from the shot itself. Neulasta really did keep my platelets up, so I guess it was worth it.
Kimmie...good luck and have fun at the beach. I think you'll appreciate the time alone.
Kaye, I hope you had a great time with your daughter.
Hugs, Jackie
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Nash,
How is Mom doing?
Jackie
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Thanks for asking, Jackie. My mom was doing much better last week, right after they drained her pleural effusions. The past few days she's been having trouble breathing again, and was very weak yesterday. I'm really at a loss at what to do. I'm taking her in to chemo and to see the onc here in a little bit--we'll see how she does today. It's very up and down.
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Hey girls. Just wanted to stop in and say I am reading the posts and thinking of you all. I am back working full time (and then some) so my computer time is limited.
Congrats to Jackie & Monkey girl-- done with rads. Wahooooo!!! only 20 more to go for me... seems like eternity.
Kim-- I had neulasta and was fine. Who knows which crappiness was from chemo and which was from Neulasta? I know my counts stayed up there and that was worth it.
June-- my simulation took forever too. I only had pain in my back from the table so I consider myself lucky. Sorry it was so hard on you. If you continue to have pain during the regular treatments, be sure to tell them. It might take longer since they will have to re-line you up and everything, but they should let you move if it's painful.
And Nash-- thinking about you and your mom. You are both so strong. Hang in there.
Hugs to all. Angie
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Nash,
Sorry to hear about Mom. I hope she gets some relief today. I'll pray for her...and your strength too.
Lots of hugs, Jackie
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Nash & Jackie,
Yes, it IS strange how we all react differently to the same tx...
I thought I had posted something about the Claritin when my onc told me about it, but maybe I posted it on a different thread? Who knows? This chemo brain!!
Also, Kimmee... Keep in mind that you need to use Claritin, NOT Claritin D... I don't know what the difference is, but my dr. told me to use regular Claritin. I don't know why, but it worked for me!
Harley
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LOL, Harley, I'm sure you did tell us about Claritin, but since I can't remember anything for more than five minutes...I feel like Dory in Finding Nemo.
Took my mom into chemo today, and after a lengthy discussion with the onc, finally determined that any IV fluid my mom gets is basically pushing her into congestive heart failure. So, no more Taxol. The good news is that her tumor markers have come down from the Tykerb alone (which is an oral drug). So Tykerb as a single agent it shall be, then. We talked about adding Xeloda back in when she starts to progress again. She's had that for a year already, but if we hold off of it for awhile, it will be almost a year since she stopped it. It's also oral.
So...that's the situation with that. Sigh. No sense trying to contain the cancer if we kill her in the process. That would be ironic.
And, for all my moaning about our crazy onc, I do have to say something positive about her. A bit of background--I saw a gyn onc a few weeks ago at the urging of my 2nd opinion onc at the university. I've been having pelvic pressure for about a year. Anyhow, the gyn onc ordered a pelvic u/s, which I had done last month. The radiologist saw something and suggested a CT or MRI to investigate more. Since my subtype of bc tends to spread to the pelvis and female organs, it pays to be cautious in my case. Anyhow, for some reason, the gyn onc reviewed the u/s herself and decided everything was fine. No explanation, nothing. All this was communicated to me through her nurse by phone. Needless to say, I had a hissy fit.
Which brings me around to my point, finally. Although I didn't have an appointment with her today, my regular (crazy) onc read the u/s report I gave her, called the radiologist, discussed which sort of follow-up imaging would be most appropriate, had her office staff get the insurance pre-auth, and within 2 hours of first talking to her about it, I had an appointment for a pelvic MRI for this Thursday. Phew. So...although I still think she is a nut, at least she's a compassionate, accomodating nut. I was quite pleased today.
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Hi
Wanted to jump in here and catch up before chemo tomorrow.
Nash you know how we all feel about your mom. Is she continuing to have improvement with the oral chemo? Is she comfortable? Im glad to here the wacky oncologist came thru for you.
Ive been having this bad feeling about the timing of my flight home on Wednesday.
Dr C. said I could fly home Wednesday and Ive made arrangements BUT he didnt say the shot was to be administered the day after chemo.And thats what I keep reading. Sooooo Im scheduled to fly home at 830 Wednesday morning. See? How am
I getting a shot Wednesday if Im leaving at 830? I asked him when I could go home and he shrugged and said the next day. Not mentioning that the aforementioned shot is given the day after chemo.Something else Im a bit nervous about is that the hospital called me this evening to tell me I have 3 more appointments scheduled tomorrow morning before chemo.
1. A consultation in the main buld. with Stem Cell
2. Business interview in the same area
3. Transplant coordinator visit
She was a secretary and didn't have anymore info.
What do yall make of it?
If this is what I think is it a good thing or a bad thing?
Thanks once again for your help!
Kim
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Nash,
I'm praying for your Mom... and you, too!
Kim,I haven't a clue why they would tell you that you could travel on the day you are SUPPOSED to be getting the Neulasta shot... maybe he thought you would be going later, so you would be able to get the shot early, in the a.m., and THEN go??
Harley
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Thanks for the prayers and good thoughts, girls! My mom felt a little stronger this afternoon than this morning. Hope the Tykerb will continue to work.
Kim--I've found the docs don't tend to be very detail oriented about these things. I'd call Dr. C's nurse and ask about the shot. He's probably not processing in his mind what you're getting at with the Neulasta and your flight in the morning.
As far as the stem cell thing, he probably just wants to get the ball rolling, since you're there, with the admin end of things. Doesn't mean he's committed to the procedure.
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Hi Ladies,
I'm bAAAAAaaaaack... Had a good time, miserable flight (more later) but Kimmie, Nash is right - Call Dr.C's nurse to get those details ironed out. Maybe your flight can be put off a day with a minimal (or no) penalty. It would be a bummer to not get everything taken care of as long as you're there. The important thing is your appts...the flight can change.
More later (as I've already threatened)
love, and hugs to you all (High Fives to Tami and Jackie!)
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Hi all,
Kimmie, maybe you can give yourself the shot after you get home? I did myself all my Neulasta shots, they are really easy. As an alternative, maybe you can go to the local pharmacy or doc office and ask a nurse to do it for you? they are hypodermic shots, really don't require a doc to do them... and in that way, you could catch your flight. I hope it works out.
Ok, today I am in a new location, on a buz trip. I am out in Poland - it is foggy, and the flight was - well, yuk. On the bright side, room service just brought up a lovely salad (the waiter didn't show being taken aback by a bald woman... good guy!!). I hope the fog clears up so I can have at least a look to the city, they tell me it is quite nice. It is the first trip I do since I got sick last summer...
Huggies to all, and a special one to Nash and her mom.
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Kaye,,,
Welcome back. Talk to you later.
Lilith...congrats on your first buz trip since BC. I hope you get to enjoy Poland. You go girl!!!!
Hugs, Jackie
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Hey All,
I'm a veteran of 3 rad txs and mentally chalking off the remaining 27! The arm pain is a bit better and of course the reduced table time helps immensely.
Jackie & Tami, please let me add my congrats to you both. You encourage those of us who are in your wake.
Harley, yes, you DID post about the Claritin. It was how I found out about it. I did try it twice but it didn't make any difference for me. However, I have since then read of scores of women who swore by it. You no have da chemo brain girly. LOL
Nash, you are a girl after my own heart. Sometimes I feel like I'm absolutely the "poster child of all b****es", because I just can't tolerate the 'pat answers' and the 'my time is too valuable to call you' and the 'I'll tell you what I think you should know' crappy attitudes. I give them modified h*** and then pull back because I realize that unless I want to start completely over we are in so many ways held hostage. It is nothing short of a tragedy that we must be both the patient and the pseudo physician. I often have wanted to look them in the eye and ask if they have forgotten their promise of; First, do no harm!!!! You can come play in my sandbox any time....permanent invitation.
Lilith, sorry the skies are so gray but it sounds like you're doing okay on your trip. I still haven't gotten to the point that I'm comfortable wigless except with family. I suppose as the kids say, I just need to get over it. Happy traveling!
Kimmie, thanks for the update. The others gave you good advice and I agree 100%. Call the nurse and tell her your flight time and let them work it out, you need a break here girlfriend!
Best to all,
June
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Opps! I hit submit too fast.
Kaye, welcome home and can't wait to hear the 'airport story'.... I need a good belly laugh and we have missed you.
June
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Welcome back, Kaye!
See, we could have a joke--how many chemo brains does it take to recall a previous posting? Glad we solved the Claritin mystery.
June--hopefully the Radiation Train will zip along. You, too, DeAnn! And thanks for validating my frustrations, June. Sometimes I feel like I'm just on overload and thus not handling things rationally. It really helps to get your guys's input.
Lilith--I am living vicariously through your travels.
I have not left the county lately, much less the country. A completely foreign concept (Ha--get it? Foreign travel? Foreign concept?) Sorry, it's late (well, 7:45pm, but that's late to me, sadly), so I'm a touch punchy. 
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NASH - That's GREAT!!! - LOLOLOLOLOLOLOL! (hic-up!) LOLOLOLOL!
I needed a good laugh because my airport story wasn't funny AT ALL.
ok - here goes:
I'm at the Portland airport, halfway through the tunnel thing, about to step on the 737 to come home to the desert from Portland when dh calls me on my cell and says: Honey, the wind is Gale Force down here, if you want to stay over another day that would be fine with me. It's as bad as it ever gets down here."
I said "Well, I'm stepping on the plane now, I'm sure it'll be fine."
So I mention to the steward in the front that "I know you guys are trained professionals, but my dh is on the ground in Palm Springs and says the wind is "gale force". The steward smiles, and shruggs his shoulders and says "well, we'll just prepare for a bumpy landing, then!"
ok.
The pilot says nothing about the conditions in PS, but 3/4s of the way there it starts getting pretty rough, but "basic rough". I was fine, pretty calm. Palm Springs is in a valley, nearly surrounded by mountains and it's always pretty bumpy when you land even on a good day because of the terrain - so we pass over the final mountain and start our descent, and it was like being on a bucking bronco. I was 'air-born' WAY too much and the thing that REALLY put me over the edge was the sideways slide. Straight down. (Planes, in my past experience, travel in a FORWARD direction. Not sideways and downward simultaneously.) I was sitting there in tears, shaking uncontrollably. So long story short, they rerouted us to Los Angeles because even Ontario was too windy, and I got out and rented a car and drove home. I found out they eventually cancelled the flight, and bussed everyone to PS in 2 busses.
I had overheard the stewardess tell the customer relations rep who came on to tell people what they were doing with us, that she was watching the plane torque from the rear. Like twist and bend.
Wheeeeeeeeee!
I did have this recurring thought: WAITAMINUTE. I didn't survive last year's BREAST CANCER to go down in this AIRPLANE.
sheesh.
Love you girls. (and terra firma)
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Good grief, Kaye! Glad you're OK!
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Whoa, Kaye! That sounds terrifying! I'm so glad that you are back safe and sound at home. Yikes-o-rama!
DeAnn
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Wow,Kay, that is a horrific story... did you kiss the ground upon landing? I have to wonder if the pilot didn't KNOW about the wind, or simply chose to ignore it in hope that it would calm down??? that sounds pretty naive, usually those winds have predictable patterns - 3 days or more!!!! I hope the weather is calmer for me tomorrow, travelling back to my wee home in CH....
I'll add that the trip is actually more pleasant that the foggy start made me fear. Now that I can see the surrounding landscape, I see an old town, a castle and a cathedral... The wind and cold feel really nice on my wig-covered head (wigless in my hotel room, but not at work). I have no clue about what folks are saying around, and that forces me to stop trying to drive things, and let others in the decision seat...
very relaxing. I'll work through lunch today, so I can go for a walk in the old town....maybe I should make a travel-w-a-bald-head blog...
Hugs.
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