Starting Chemo September 2015; join us!
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Awesome Lisa! My center is small, with only 8 rooms with a recliner for you and 2 comfy chairs for guests. That's what's missing in my place, bathroom in the room! I don't drink much during infusions, maybe 1 or 2 juice for the 3 hours there. I suck on ice chips as I was told that helps combat potential mouth problems right off the bat. I had zero mouth problems my first round and didn't lose any taste. We'll see this time around. Since round 1 AC wasn't too bad and was great after day 4, I'm reading my journal to see what I did and follow it.
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Mom2Boo - let's try to meet up! We can private message about a day and time.
I'm in the chair waiting to start Taxol #1. They don't give extra steroids with T - just what's in the bag. Thank heavens! I'm a little nervous. They said I'd probably have the Neulasta shot tomorrow and then maybe not again. Yay!
Do any of you do the iced fingers and toes with Taxol or have you? I did it with AC and will do it as long as the cold packs last but they won't go 5 hours! Just wondering!
Congrats Annie!! It's hard to imagine - I finish Dec 30. I moved it a day because kids are here until 29th. I can't wait to read all about "Annie does radiation!"
Have a great day!!
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Sailorgirl, after my first round I had mild neuropathy so I have been icing my hands and feet during taxotere but it's only an hour. The neuropathy isn't getting any worse. Five hours will be harder to do. Bring two sets of ice bags and swap them out. I put mine in the freezer at the infusion center lunch room until it's timer to use them. If I forget my bags they make ice bags for me.
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I'm doing pre meds for round 1 of Taxol now. If all goes well, the actual Taxol infusion is three hours. The MO's PA said that neuropathy and fatigue build over the infusions, so I should expect minimal SEs this round. She also said that steroid swelling should not be a problem, and to keep the compression wrapping on my arm.
My center is at a major hospital, but is not the main hospital infusion center. My MO is based in another hospital, so this center is an outpost. 14 recliners in one big room. Free coffee, some drinks and snacks. I brought a sandwich today. Not fancy, but perfectly OK. Everyone is really nice, and I like the MO and her PA.
I drink a ton during the infusion, and pee accordingly. My liter water bottle will be empty before I leave. My standard procedure at this center is to get vitals, have a nurse access my port and get lab samples, talk to the MO or PA half and hour later after the labs are back, then pick a recliner and start drugs. It takes a while, but seems pretty efficient.
For the record, round 4 of AC was the easier by far. I actually felt pretty normal for the last few days. Coffee this morning tasted like coffee. Bliss.
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I was told no caffeine the day of chemo so I've been skipping coffee/tea. Not sure why but since I had a great round 1 AC overall, I'm following my notes and journal of what I did. Too paranoid to change things up now even though I know it could get worse.
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Arista, I changed some things from treatment. Nausea wasn't much of a problem for me (more of the mild, I-need-a-snack variety) during AC. Constipation and hemorrhoids were. Since most of the nausea meds cause constipation, I backed off on the anti-nausea meds (always in my purse with a barf bag). That worked for me. I'm all for not fixing something that isn't broken, but I needed to fix something. I wish you continued smooth sailing
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sailorgirl - I haven't iced hand and feet but I leave them out ( flip flops and out of blanket) to be cooler than the rest of me. I suck on ice the whole time during taxotere since the first time and I've avoided mouth sores since then. I did have some neuropathy the first 3 times in my fingers but this time I've been taking a B complex and L-glutamine about 20mg every day and it's almost nonexistant. Good luck I hope you have minimal SE's. Pm me when you're feeling up to it, I should be on the upswing in a day or so.
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Chemo nurse just told me they do Taxol slowly because it cuts down on neuropathy! My MO's NP said to watch for allergic reaction! I know why we all seem a little confused - in addition to our chemo brain! 😜
She also said the icing doesn't do much. Ho hum...Benedryl had not kicked in yet...now on the anti-nausea bag! It's been 2 hours and T bag goes for 3 hours and it hasnt started yet! So now I can see why they say 5-6 hrs total!
No snacks here....just water!! I forgot my ice cup do just downing very cold water. I would think in the desert they would have ICE!!!
Thanks for the L glutamine info Mom2Boo. I took a bunch this AM in my protein shake. Nurse said they used to recommend it but because there's not enough research (aka - no big drug company), they had to discontinue telling people that!! Oh my! They also used to tell people to rinse mouth with that or lysine in water to prevent mouth sores! I'm going to try that!!
I'm also no able to get my MMJ card because our state is questioning them and they want to keep their license! Really????? There are fly by night docs out there giving people cards and a huge ONCOLOGY practice (4+ highly regarded doctors)is being questioned??? Crazy!!
Trying to sleep....not working!
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So excited after all the delays just a little over 6 months from when I was diagnosed
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Awesome Exercise!!!!!!
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Hi ladies! Annie and exercise, huge CONGRATS! I can't believe some are done already, I'm not even halfway there!
But God is faithful and I am out of isolation. It turns out the Neulasta just hadn't kicked in yet. My ANC went from .1 to 8.4 in 3 days! And that spot was not an infection, but scar tissue from the msx.
I went back and forth, back and forth on the DD or regular Taxol schedule. My doctor said they are equally effective, unless you are triple neg,, in which case you should do the 12 weeks. I did a bunch of research. I talked to friends. I decided on the 12 weeks, but I'm really going to miss the Neulasta, which I will no longer get. I think my counts will be chronically low without it.
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Is anyone having a PET scan or MRI when treatment is over? I'm just curious to see if they do any testing to see if they "got" all the cancer that would be visible by such tests. I was told by the BS that they believe they surgically removed all my tumors, because the axillary nodes were cancer-free and that all this chemo and radiation was "just in case" a few cells remained. But since the tumors had extranodal extension, I'm not sure that is so. Do you just wait a year for more testing and blood work?
Also wondering if anyone asked for or was given a likelihood of recurrence %. I demanded it and was given a 30% chance of recurrence for my particular situation. Although that is lower than I would have guessed, it still seems pretty high to me! I try really hard not to let this steal my joy or take over my days, but I feel like stage IV cancer is coming down the road... not today, not next year, maybe not in the next 5 years... but coming nonetheless. I can't shake that feeling!
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Cajun - that does seem high % for reoccurance. Mine before all this chemo and rads was 50% i think. Maybe due to the gene?
Before my rads they will do a ct scan on me for positioning of their "beams"
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My surgeon said I will most likely have another PET scan between chemo and surgery.
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From what I have read if your are BRCA + and you have the mastectomy and hysterectomy you drop down to 8%. There was a lot written about if when Angelina Jolie came out with her dx. I'd fish around for more info.
The plan they have for me is 7 weeks rads, lupron and AI for 5 years after rads unless i decide on the oopherectomy instead of lupron. I need periodic echo cardiograms and bone density scans. Blood work always includes a test for tumor markers. I see the BS every 4 months for 2 years with mammogram. That reduces to every 6 months for 2 more years, then once a year after that.
With chemo and rads my recurrence went from 12% to 7 or 8%
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congrats exercise. You did it
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According to my MO, the risk of recurrence for early stage ER+, Her2- cancer is ball-park estimated as 10% for each node involved and then added 5-10% based on the size of the IDC tumor (1.3 cm). But that was for my cancer, which is Grade 3. He said being BRCA positive does not affect the risk of recurrence, but affects the risk of another cancer. He said the risk from my age is just that there is SO long for the cancer to come back so of course recurrence rates are higher. I've read studies that cancer in young women tends to be biologically different and more aggressive, but my MO said they no longer believe that to be the case, it's just the time it has to come back. He said the extranodal extension does not affect prognosis, though some studies seem to indicate otherwise, though it's hard to say when you're just dealing with the sentinel nodes.
BRCA1 and BRCA2 have different rates for different cancers as well and the risk of cancer after prophylactic surgery differs from that after a cancer diagnosis.
I'm not sure why I really care about the numbers... even if he told me it was 80%, what else could I do other than possibly alter my diet even more than I already have? I don't drink any more, don't eat any sugar, don't smoke, am active, have treated this as aggressively as I can. What else is there?
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Also wanted to add that I asked for the recurrence rate for 10 years. I know most only count 5, but recurrence rates continue to rise if you go out 10+ years. Of course, if you're 70, that probably doesn't matter as much. But if you're in your 30s...
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First round of DD Taxol in the bag with no reaction! Sees like a lot of us had treatment today. How did everyone do
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All any one can do is keep up with your screenings and take care of yourself. The numbers change every year.
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wtg! Everyone who got another round behind them. One step closer!
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Exercise and Annie -- WOO HOO! Congratulations - I am over-the-moon happy for you.
I had my first of twelve low-dose Taxol treatments today. My day had a twist!
My wizard of the PA was very concerned about my swollen right hand. They trundled me off to radiation where I was given an immediate ultrasound. She suspected a clot.
Answer: I threw a non-occlusive (non-blocking) clot just above the superior vena cava branch. (She must have known it would be non-blocking, because my arm hadn't turned green and fallen off. Duh.)
The therapy for the clot (and prevention of future clots for the 12 weeks of Taxol*) is Lovenox injections at home twice a day. I will keep taking them in the run-up to surgery, so that will be a total of 16+ weeks. While that's a pain, I prefer the gold standard clot prevention to my coag management nurses struggling with my test result rollercoaster.
I had no reaction to the Taxol infusion (yeah!). I did not ice or take L-glutamine. I have been taking 100mg of B6 per day. We'll take the side effects "steady as she goes." (And I'll certainly consider icing and L-g if I develop neuropathy early on.)
*Gonna have to write lyrics for all "Twelve Weeks of Taxol" with the holidays coming up.
"On the First Week of Taxol, my PA gave to me: One Ul-Tra-Sound!"
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Dang Lisa that's scary. I'm so glad you're ok and they were on the ball and caught it!
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Minnesota what a relief you listened to your body and they found the clot. Keep us updated on the swelling decreasing and monitoring. that is something that can sneak up on a person.
as for recurrence odds. Maybe it is something about being in the middle of treatment but I too have agonized about over this.
Palb2/age 42/bilateral breast cancer of different kinds both grade 3,family history. Ovarian cancer risk, pancreatic risk.
My situation is not a round peg placed in a neat round hole.My MO is honest they do not know what to tell me my odds are. I have had to look at things differently and accept that with the BMX ,Chemo, hysterectomy, Arimidex, sleep, diet and exercises changes. I am doing all I can. Hopefully my body will beat the odds but I don't want to miss out on the joy I am having now to worry about the future all the time. Though I unfortunately find plenty of time for this. SIGH
Thanks for the well wishes. I am socked going to sleep for a few hours and run back and forth to the potty.
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MinnesotaLisa glad they caught that. Stay well.
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Those who are done, congrats! Envious!
Lisa- glad they found the problem and are treating it. Clots are pretty common and very treatable. So hang in there my friend.
In at 10:00 out at 3:00. 3 hours was the actual chemo. It takes 2 hours to get my vitals, get the pre-meds together and the many supplies needed together, wait for pharmacy respond to the call that "she's here" (These are highly controlled meds so they don't just send the meds over but wait until you check in). Then you have to wait 30 min for the pre-meds to take effect. I told them no Ativan this time. That shit makes me loopy and I don't have a problem sleeping. I wanted to can the Benedryl too as that makes you a bit loopy but they said that's needed because it aids with the nausea and vomiting. Much better without the Ativan. So if it makes you loopy and it's part of your chemo pre-meds, you can request to bag it. That's the only one that was optional for me.
Got the red carpet treatment as usual. My buddy Tammy tended to me. The chicken salad with caesar dressing I had ordered yesterday while doing labs arrived so that was my lunch. I find chewing on ice chips helps with any potential mouth sores wanting to form and it is rather refreshing, more than cold water- so that's what I munched on and an OJ and cranberry juice.
Polly my buddy nurse navigator came up from the women's center and sat with me for an hour. She brought me 2 breast cancer awareness necklaces. That was sweet. I don't wear breast cancer anything so I'm going to keep it in the nice packet and put it on the fridge with a magnet.
4:00 pm, so far so good. Had a Nature Valley snack bar and am sitting with anticipation that I may be hurling things up tonight just like I did the post chemo night #1. I've studied my journal and am armed. I hope I'll at least have what I had last round and of course, better time. We shall see. Tomorrow I go at 3:00 for the Neulasta shot. It was kind to me last time when I took the Claritin and Tylenol combo post chemo pm and for 4 days following. It's all set up in my am/pm pill box. So much crap jammed into the slots but I determined to do all I can to not become flat on my back..
When I got home I found a priority mail box at my door that was quite heavy. I didn't order anything. Turns out my sweet aunti Simin sent me this nut mix and candy that I so love from Iran that she had brought for me. In our culture when you go somewhere to visit family or friends, you takes gifts- even if you aren't staying in their homes. So she comes with 4 suitcases, 2 of which are gifts for every fam member from age 0-whatever. I love what she sent me. The nut mix from Iran taste so much better than what you find here. Very fresh and tasty. I still have some packages from before and was reminded that I have this in my fridge so another healthy munchy snack added to my snack routine during chemo! Yay!
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Minn Lisa - glad you got that taken care of! It's always something! Sending good vibes!
Had DD Taxol today. Arrived at 8 AM and finished at 1:30. So far so good. I plan on going to work tomorrow. Mouth is dry but no nausea! Yay! Didn't ice so will see how that goes. I did during AC. Nurse said after you take off the ice the drug goes there anyway....for some reason I was too chilly to ice and really couldn't keep it going for 3 hours straight.
Hope it all went well for everyone we haven't heard from and I'm dreaming of ringing the bell already. I could do a Christmas song about that - instead of "dreaming of sugar plums" I could say "dreaming of ringing the bell.
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Nothing against the bell per se but for me, that would drive me nuts hearing bells while doing chemo. I'm happy for people ending that journey but I usually have a dull headache and sounds become a bit enhanced while in the chair. My place doesn't have a bell. They give big hugs and congrats when you are done.
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Well you ladies were spot on! Day 14 post chemo #1 and hair is coming out in clumps! I have hair loss anyway from androgenetic alopecia so I've been used to heavy shedding all the time, but never clumps! Yowza! I do have short very layered thick/wavy/curly hair so I think I'll be able to look just heavily diffused once it starts to show which despite the massive amount tonight in the shower, it still looks the same. Pulled out the caps I bought in the summer ready to roll. Have a bag by the couch to help this thing along. As soon as it looks bad, on goes the cap! Good times! :S
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Haha! I probably would have dragged my pole to her and asked. I would love a time frame for after radiation is over, what is the countdown like.
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