Starting Chemo September 2015; join us!
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Carolina - Don't feel obliged to "catch up" - glad you're out of the hospital and back on a chemo track. Several of us have long treatment schedules ahead of us, so we'll keep you company. (I'm betting I'm the last one still in treatment next May or later!) I don't know if you're on DD or weekly Taxol, but many of us are on the TaxolTrain right now - welcome back aboard!
Fidget - This experience brings out different behaviors in those close to us and I'm very sorry your husband has so little empathy. He couldn't be more wrong trying to judge your condition. Most of us are exhausted most (or all) of the time - it has nothing to do with how much sleep you got and everything to do with being pumped full of poison that kills good cells as well as bad. It's awesome your daughter is close to you and taking care of you. Hang in there.
Exercise - I remember all too well that overwhelming, terrifying "first month" and am sorry you're going through the same process again. You're right: this experience takes so much out of you, it doesn't seem fair to have to go through that level of stress and anxiety again. You're so smart to let go of holiday stuff. We need to take care of ourselves right now, first and foremost.
HUGS and good wishes for a low/no SE week to all!
PS Anxious to hear from Grey....
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Good luck to everyone doing shitmo this week. Yep, a new name for chemo!! Shitmo! #4 of 4 AC is tomorrow so I got my Emla cream on my port to numb it down so I don't feel the lovely needle prick to do labs today. Taxotere is up next for me in I don't know if it's 2 weeks or 3 weeks to start. I just know it will be given every 3 weeks.
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Thank you all for that. I'd love to find out the big stuff that happened but I know it would take quite awhile.
fidget, I'm so sorry. I wound up having a pretty big blowout with my own husband some weeks ago (in between hospitalizations) about his detachment and lack of concern. We were already in a precarious situation in our marriage, but I have also told him, just like you, "I don't have the strength to fight both you and cancer. You need to choose whether you can support me or just speak up and move on right now." During the blowup, he said he was in "survival mode", thus just gaming 24/7 and not seeming to give a shit about me. I told him how lovely that was, but that the girls and I didn't have that luxury. He was so furious that my friends were upset with him and still doesn't seem to realize the extent of how completely disassociated and unsupportive he had been. There was even a very cold email from his business trip while I was in the hospital saying "my absence has been noted, and I will need to be traveling a lot more from here on"--and no sign of regret or its impact on me. That second hospitalization seemed to trigger something toward the end, as he started voicing more compassion, more 'partnership', and doing things like bringing a bagel for breakfast. It was actually a huge deal for me and helped with the isolation I'd felt. I hope your husband comes around as well and becomes a partner in this. I know it's meant the world to me.
That second hospital trip was awful. I started running a fever on November 3rd, which was my kindergartener's birthday. I called the office and told the triage nurse to PLEASE let me have that birthday party; I'd do anything they wanted afterward but please don't take that from me, too. I had no idea it would turn into a 14-day nightmare of trying to locate the source of fevers. I had an undiagnosed bladder infection as well as C. diff, but days of treatment went on while I continued to spike fevers. They eventually took the port out, hoping it was the source of the problem... and the fevers continued after a day's break. Hubby was traveling during those weeks (he really had to be, and I was in good hands at this second hospital while my dad handled things at home), so it was desperately lonely and painful. I'd already developed a DVT in my jugular vein, so no one wanted to touch the port. Meanwhile, my veins are SHOT from the chemo and even drawing blood has become a really brutal and painful process. Going through that multiple times a day, having no human contact because everyone was gowned and gloved, and only being touched when people were hurting me--my oncology nurse said that after what I've been through, she would expect some level of PTSD. I was wondering the same thing, simply because the smell of the alcohol pads was starting to trigger me.
It just feels like this will never end. I lost about four weeks on my chemo schedule because of being in a hospital, I feel useless to my family, and all the good plans (including Christmas ones) just keep going to crap. I'm typically pretty positive but there have been some dark days since I wrote to y'all from the first hospital stay.
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Oh, and I had my first visit with a plastic surgeon last Thursday. Humiliating (though the MD himself was professional). He was an hour and 45 minutes late, which is apparently typical, and just blasted info at me with a French accent when I clearly needed everything to slow down so I could follow. I hardly have any notes, and I take copious notes.
I AM a candidate for DIEP, which was opposite of what I'd been told before. I was surprised and a little overwhelmed. And standing in an open hospital gown while someone squishes and manipulates your breasts and belly fat (while taking measurements and pointing out cosmetic flaws) in front of your husband is pretty much an experience I would never like to repeat. Now I have to figure out what the heck surgery to have, and while I was leaning toward BMX, I'm now anxious about the reconstruction options.
Can we all just bail out for awhile and go on a cruise together??
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Glad you're back Amy. I was worried a bit.
Fidget my husband is totally dissociated most of the time. I try to talk to him and I get grunts. He started coming to bed hours after me. His nose is in his tablet every moment. Since my chemo ended he just figured everything was back to normal so the kids got dumped back on me 100%. I screamed and yelled and laid it all out but nothing got through. I wish I had some advice for you. If we were closer I'd take you out for coffee! It's hard being a woman and even harder being a sick one. (((Hugs)))
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fidget your post brought me to tears, I'm so very sorrythat your husband is so non-supportive, and hurtful. I don't have concrete advice because even though I've been in therapy from this since just before BC, I haven't yet come up with answers. Therapist says my husband is incapable of empathy, maybe yours is too
Cancer, surgery, chemo, rads, hormones ---- why oh why do some of us have to also deal with relationship crap??? I hope you find help and support ((((hugs))))0 -
Cajun- so you are taking aromasin, are you postmenopausal? Was wondering because I haven't had my period for 2 myths now from chemo and Dr said , " you are not considered in menopause until you you are period free for 1 yr" so they put me on tamoxifen.
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Ugh hate the chemo fog brain I can't remember think spell!!! And my vision is bad !
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Aga same here
I swear the chemo's replaced my brain with oatmeal Can't think straight, and I've spent the whole day thinking it's Tuesday! "They say" this clears after chemo, but it takes a couple months :0 -
So I found out why my MO wants me to do Taxotere instead of Taxol. Taxotere is a bit newer in this chain of meds. She's a researcher too and was involved in a study that showed pts did better SE wise with Taxotere than Taxol- Taxotere every 3 weeks, not 2. This way you also eliminate the need for Neulasta which doesn't effect me anyway. Just a pain to go in the day after chemo (not the drive, that's 10 min). Other MOs are going straight up by the book with the Taxol and don't waiver. I'm so glad she's into doing research studies too! The only thing that may hamper my getting Taxotere is if the stupid insurance is stuck on by the book Taxol in which if it is, then I'm doing every 2 weeks. Other than less SE with Taxotere and eliminating Neulasta if you do it every 3 weeks, they're basically the same.
While I do have nausea and some head shit for 3-4 days post chemo, I've always bounced back 100% through to the next round. She calls me a rock star. # are always good too thanks to her advice and putting me on more ferrous sulfate and having done iron infusions before chemo. I guess I'm a lot better than what she sees come through her office.
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gah I hate chemo brain...forgot my work laptop at home. Now I'm using a loaner.
Fidget- hang in there girl. Relationships are tough. But you're tougher. Sending good vibes your way.
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EL Tigre- I had MRI, it didn't show any lymph node involvement, CT scan showed no lymph node involvement. Unfortunately during surgery the first node had cancer, so they took 9 nodes and 4 had cancer. This lead to second surgery, they removed another 15. Thank god none of them had cancer in them. I still have some numbness and weakness.
I go Wednesday for my #4 Taxol. Most of my issues with Taxol dont start til Friday evening. Not sleeping and the nights sweats are probably the biggest complaint so far. A/C was definitely worse for me.
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Hi Arista I was not prepared for Taxodere....shitmo is definitely what it is. I coped better with the second round of it. Bone pain muscle weakness was not good for the second round my doctor prescribed Celebrax its an anti inflammatory gentle on stomach. I think this made a huge difference also fatigue high. My legs gave way coming down stairs. Not trying to alarm you just take it easy hold on to rails. I wish someone had told me. I stopped going to gym too. I dont think my joints could take it. This stitmo is susupposed to be highly effective so just push through xxx
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Taxotere tried to kill me and I still had the Nuelasta.
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same as Annie re: taxotere
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exercise - doing good. No shin splints on #2 but I got the pleasure of body itchiness that I am guessing is from neuropathy after 10 days from #2 dose. So I have been slacking on my 10g per day L-Glutamine, so maybe that's why the itchies showed up. I had to have hubby pick me up from work today and now working from home, on more LG and Ativan to help. I def learned my lesson for next time. We will ask and discuss with our onc at our next visit tomorrow. I just don't want any delays but if we have to switch it's "small beans". Besides that no other supplements...yet
We shall see what I can take on rads Sim set for 1/13 and begin on 1/27 unless chemo is changed (fingers crossed it's not).tkemp - Yes my CT scan (oh what fun) and my MRI didn't show any BUT my second onc said she felt a swollen node under my armpit and was concerned with the length of time my surgery was from that moment. But yes....like you they stole 23 nodes and 4 were positive. I'm happy that your 2nd surgery turned up cancer free nodes. They say numbness and weakness for awhile. Numbness could last up to a yr while the nerves repair themselves. I am having a little lymphatic massage (not including the collar nodes that they plan to radiate) to help with the swelling in the left armpit area. Slowly but surely getting my arm back
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AC has been pretty kind to me overall, just 3-4 days post shitmo is shit. We'll see on Taxomaybenotsodear! Are you guys doing Taxotere (alone) every 3 weeks or 2? I'll be doing it alone every 3 so, not 2.
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I am also having Taxotere and get Neulasta.
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According to my MO, doing Taxodere every 3 weeks and I won't need Neulasta. I hope! I hate going to the center the next day for a shot.
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I have taxotere as part of my chemo regiment every 3 weeks and still get neulasta.
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Maybe it's because my numbers have been high. I've had the best CBC results so far according to her. No fatigue or illnesses. I was a bit nervous yesterday going to the ER to see my bff's mom whose defribrilator was shorting out sending her shocks. Looked like she was hit by lightening! She said it was pain like no other! I saw that. wow.
I'm doing well with AC as far as SEs so I'm going in with the attitude that it will be fine on Taxodere. My MO did not say it's like this for everyone as nothing is. I know some of my good luck has to do with my body as I don't have allergies either and never had SEs with any meds I've ever been rx'd. If I look at the possible SEs then it's mind boggling. I'm ready for it either way. Bring it on!
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Im on every three weeks I managed AC ok too thats why this Tax shocked the crap out of me literally stomach cramps and diarohhea. Hope it will be better for you and like I said second was easier than first.
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Hi guys! I am starting Chemo this month and was told to NOT shave my head yet. My nurse says ~30% of the people don't loose their on on Taxotere (sometimes it is just a lot of thinning and my hair is VERY thick). I am going in being realistic and assuming I will loose my hair, but I am just curious. Has anyone here not lost their hair? I am also on herceptin. Thanks for sharing and keep up the fight!
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re: Everolimus - it can be taken with tamoxifen or some of the AIs. Regarding menopause, I'm going to be considered post menopausal after my ovaries are removed. Depending on when my surgery is scheduled, I may take tamoxifen to bridge the gap. I won't start anything until after chemo.
I asked my MO about taxotere a while back and got a different opinion. Imo, they are both taxanes and have similar effects. I have known people who worked through Taxol with no issues. And people who had to quit. I've never heard that taxotere has fewer SEs. Nobody wants neuropathy and I dont think there is any way to predict that. I wish smooth sailing for everyone on the taxanes!
Carolina Amy, big hugs!!!! Did they ever find the infection? I'm so sorry you went through that.
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hi Procter -are you having adriamycin and tax? The A should cause 90% hair loss.
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proctor: you can wait it out and see. It seems pretty consistent that most of started to really start losing hair at about 2 weeks after first infusion. Within a week of first starting to lose the hair, it starts almost tangling and getting a different texture. You'll be able to tell if you want/need a cut or buzz. I chose the buzz as it was clearly going and it was getting itchy and bothersome with the clumping
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I'm on the AC and I've lost probably 70% of my hair. 30% is hanging tight so far. It started coming out in major clumps day 15 post first infusion. 2 days after that I went for the buzz job. I have hair loss issues anyway so it wasn't shocking to see a lot of hair come out, but if you think it will be traumatic, then chop it short now. I went in steps: from shoulder which is my norm to neck to the short buzz army type look. When my MO said I was going to be on AC and Taxotere, she said I'll be losing it all so I'm assuming since I'm on my last round of AC that the rest will jump ship on Taxonotsodear.
MO didn't mean less SEs, just it bothered her pts less than the Taxol in her experience. For neuropathy I've heard a ton about acupuncture and my insurance covers it so I'm set there. Positive attitude is my motto even when I feel shitty the 3-4 days after shitmo.
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Thanks everyone for all the support. I don't know what I would do without this group. It's just comforting to know that you all understand how I feel. I hate that any of us have to go through this, but when you gals share your stories and kind words, I don't feel so alone. What a strong group of women you are! I did get some good news from the MO today--my BRCA came back negative. It was nice to get some good news. Tomorrow is chemo #5. Good luck and love to all!
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yay, fidget! I wouldn't wish anyone membership in the mutant club.
As I get nearer to my chemo end date, I've realized how hard it is going to be to go back to work. I've loved having more time with my kids and I sort of dread all the "how are you" questions and stares during court. If I wasnt carrying the excellent insurance for all 6 of us, I think I'd quit and stay home. But with all the follow up care, I don't really see it as an option. It took a crazy amount of energy and caffeine to up with my life before trx, I have no idea how I will do it now.
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