Chemo starting April 2018
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GAWarrior, my MO said I can’t take vitamin B on AC because it can interfere with the absorption of chemo meds. Not sure about taking it during Taxol rounds, will ask when the time comes. Please check with your doctor before taking any vitamins. I was only cleared to take vitamin D3 and probiotics, nothing else.
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Innba2018 What is crazy is mine said B6 only and L-Glutimine powder. Nothing else. I ask about vitimine d and he said no. Yet others say yes. Super confusing! I guess do what your dr says. Right?
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InnaB, like LIFE I did ask my MO weeks ago and he said it was fine to take B vitamins with AC. Weird. I will ask again, though, thanks!
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That is super weird
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Ok, did a search on MSK Integrative medicine site and read some articles, and according to all of them B6, B12 and D3 should be ok to take during chemo. Maybe it was my fault and I didn’t formulate the question correctly. I asked about B Complex, not about B6 and B12 specifically. Tomorrow I’ll see my MO and confirm.
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Haha! Glad to know my dream car doesn't require a stick shift.
Yesterday was 10/12 of Taxol. Again, I only got 4 mg of Decadron (and confirmed it had been 20 mg earlier--no wonder I felt crazy). No problems at all, for the 2nd week--and this week's nurse said it was a sensible change and didn't get all nervous. WBC still good, RBC/hematocrit/MPC low but acceptable. Eosinophils still up, but not to the extent they were the past 2 weeks. I did have some more tingles, and some bone pain last night that resolved by this morning. I've been trying to tell everyone (in a very nice way) that I need 'peace and quiet' until the end of June (seriously, lots of people texting, and it's wearing me out).
Met with the radiation oncologist, who was fabulous. I will get a total of 20 sessions, which includes the "boost" doses. She was cognizant of my long drives--and yes, I have books on audo and a load of podcasts. They'll do a foam mold unique to my shape, a CT of the area to target specific areas only, and a trial run with lights before the actual radiation on August 7. She said most patients tolerate this well, though to expect darkening of skin, maybe firmness, but that it goes away. Also, the effects are cumulative so the last part will be more tiring than the first part.
The bone pain has thus far been mostly treatable with Tylenol and Aleve, so I hope I've not worried anyone needlessly. I have spinal arthritis, so bone aches happened to me before this--I'm just not used to it in my legs.
Hope everyone is doing well managing SE this week.
Dee
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PS: On the vitamin front, the only thing they said to avoid was extra Vitamin C. So, I take a multivitamin, B6/12, and calcium/vitamin D. Odd that there is such disparity in doc's opinions on this, isn't it?
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That's a really good update, Dee! I remember only a few days of fatigue while I was going through rads, and I think mostly after I'd had overly big/busy days. My skin did as predicted, but it's all a distant memory. You'll get to know your techs pretty well, and be ringing that bell before you know it. I'm looking forward to being where you are in another month or so!!
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The oncologist said it was ok for my wife to take her daily multi-vitamin and calcium..
Just a quick update.. Janice is feeling really well. She still has a small amount of drainage from her incision so the surgeon and the oncologist said today that we should wait one more week to restart chemo. They don't want the bacteria to start having a party again, and neither do we.
By the way, my birthday is next week and FaceBook sent a reminder that I can start a fund-raising page instead of gifts, so I did that and linked it to breastcancer.org. It takes people to their FB page where they can make a donation. Just something to keep in mind to help the people who make this website available.
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Engine, that is really good news about your wife. Wishing you a very happy birthday in advance. I agree, this website has been so helpful to us.
GA Warrior, thank you for the reminder about sodas. I have learnt so much about oral hygeine from you in regards to chemo mouth, please keep them coming. I know you speak out of concern. I have sore fingertips as well, started on AC. Now on Taxol, I feel them on day 2 to day 4, by the next infusion it is pretty much gone.
My MO is not okay with any supplements. I have checked and rechecked.
I must be the only one who does not get any steroids on Taxol. I only got steroids for the first 2 infusions. The only change I have felt is I am tired on day 2. Nothing a power nap cannot fix. I have been told that the fatigue builds up as you keep progressing on Taxol and also with rads.
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Thanks. We think this is a good choice to hold off another week, though my wife is bothered by the fact that, assuming they restart next week, we will be a month or so behind. She had the septic infection after the first round. She still has at least three, and probably five more rounds to go. That puts us to almost Thanksgiving before she is done
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Thanks for the vitamin research, InnaB. Except that I've also been taking B complex (because, if I can take B6 and B12, why couldn't I take B complex? - my head says...). Not sure I specifically asked about B complex. but I will now.
Dee, yay for you - only 2 more T to go! I'm super jealous. I'm glad your blood counts are okay/holding steady, too. Thanks for clarifying the bone pain. I'm picturing Neulasta-type pain, which I found debilitating and hard to imagine working through every week for 12 weeks. My MO swears it should only be pain that can be taken care of with Tylenol. Hoping you're both right! I'm glad your rads are getting lined up, too. It makes it easier to look forward to the plan, once you have one.
Engine, I'm glad your wife is doing well, but I'm sorry everything has been pushed back another week. I'm sure she's anxious to be moving along, though I think it's good that they are delaying. Happy upcoming birthday!
Frog, glad to help. I DO give reminders because I care, but I feel like I'm nagging (in my head). Enjoy your soda - just occasionally and with a meal!
RE our fingers, mine are better, but still sore. I'm downing L-glutamine and hoping that helps. The nail beds just feel bruised, which isn't good when you're trying to floss 8-10 mouths per day and the floss hits right on your fingertips, lol. They haven't given me pre-chemo steroids to take for next week's first T, so I either won't get them or it'll be via IV. We'll see! Weekly T ladies - any constipation or diarrhea to look forward to?
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Good evening everyone, I’m doing okay. The shingles are starting to scab over.. which is absolutely good news. I started call for consults with surgeons. Seems to be a team is what I get when it comes to breast surgery and reconstruction. Other than that working four days a week, three there and than treatment with one work day from home. I’m exhausted every day so binge watching, house..
Gawarrior- I didn’t know lemon water was bad as well. There goes, my go to drink...lol. My taste buds are super sensitive. And especially towards the tip of my tongue. I can’t stand milk products or water... I’m getting tingling randomly thru my body then it goes away nothing staying specifically feet or hands.
Frog- how are u doing ?ur down past the half way marker,,
Hope everyone has a good weekend without any SE’s.. sending good vibe
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Aww, thanks, Ingerp, that’s good to hear. Engine, happy birthday and a lovely idea to contribute to this site.
Frog, is it maybe they just used steroids for the first two to avoid reaction? I was shocked at the hefty dose I was given rounds 1-8.
Urdrago, glad the shingles are healing—I am so sorry! Oddly, weve been watching a lot of House as well.
Dee
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GAWarrior—re: the Big D/Big C, let me just say I was a little petrified of the Big D going into this. I have IBS and my system runs fast as it is. I've had none. Nada. Zip. I'm sure some women get the Big C (I missed one day of “going" after #1 but that's it). I do take a Zofran for two days after tx specifically because it's constipating, and a Compazine the first two nights to help me sleep. I've had zero nausea.
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Good Morning Everyone,
Finished 11/12 of Taxol yesterday.. I did not ask about a change in steroids since I only had 2 more to go. I take B6/B12/L-Glutamine and a Multivitamin. My MO is not keen on supplements but his nurse practitioner does assist with answering my questions on this. He did say I could go back to my normal supplements when I am just on Herceptin. However, he did say that I will probably have to cut back again when under going radiation. I am a big Homeopathic person who does reflexology and foot bath detoxification on a regular basis. I like to try to resolve issues homopathically before going to the medical doctor so I am really missing my herbal supplements. I am still going for reflexology monthly and have upped my foot bath detoxification to biweekly. It seems to help reduce the SE's on the week I get it.
GAWarrior, my constipation and diarrhea has not been too bad. I usually have some diarrhea on the first 2 days after treatment but it is not to a point I need to take medication. I will then have some constipation after that but again do not take any medicaition. I have always had regularity issues and took herbal supplements which assisted me with this. Therefore it not surprising to me that I have been swinging back and forth between the few. Also, I cannot really call my pain bone pain. What I have been getting is severe achiness and tiredness like when you have the flu and this has only happened in the last few weeks. Before that the aches and pains were subsided just by using tylenol. I am going to try Alieve per astayanax suggestion. I am sure for you it will be a piece of cake after having AC.
Urdrago so sorry about the shingles but glad you are on the mend. How horrible!! Happy birthday Engine and glad your wife is doing better.Frog I am glad you checked on the steroids, I wish I would have.
Ok all of you that are moving onto radiation in the next month or so.... I would like to continue talking about our experiences as we move on to the next step. Do we need to start a new thread or can we stay in this one??????
Have a great week!
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Positiveinohio--I think it'd be great to keep updating this thread through rads, although someone will start a "Starting Radiation in XXX 2018" thread too.
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Positive, congrats on being 11/12!! That's awesome. I would love to join you and others on a Radiation forum since we've gotten to know each other. Like you, I've noticed that the pain was minimal at first and has only become bothersome here towards the end of Taxol. And as you say, probably not as bad as some...
dee
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Urdrago, I'm glad you're starting to get relief from the shingles!. Are you sucking on ice chips during the infusion? That may help your tongue. B12 should help, too, if your MO says you can take it. Sorry about the lemon in the water...you can still do that, just don't drag out drinking the drink...finish it within 15 minutes or so or have it with a meal. If you can rinse with baking soda after, that helps to neutralize the acids in your mouth, too. (I'm sure your sensitive taste buds will take particular delight in baking soda, lol.) I'm glad to hear that you're working - I've been wondering if I'll be forced to take off the last few weeks of T due to exhaustion/pain/neuropathy. Work from home is not an option in my job!
Ingerp, I have IBS, too, so I've been dreading the Big D when I start T (although the Big C I've been having with AC was no picnic like you'd think, let me tell you). So glad you've had no nausea - I'll do the 2 day Zofran plan, too, then, thanks.
Positive, I can see how you'd swing back and forth (D or C). They told me Zofran is constipating, so maybe if you take it the first couple of days, that's what brings on C on day 3? Anyhow, it's good to know your experience and also that your pain seems manageable (yours, too, Dee). Let me tell you, Neulasta pain is a b^tch. I wasn't looking forward to that every week.
Hoping you all have a great weekend!
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I admit that I wussed out and contacted the nurse navigator today for Rx pain meds to cover the final 2 rounds of Taxol pain (and it's just for about 12-24 hours--nothing more than that). I don't know what she prescribed, but I pick up a script on Tuesday at infusion #11. Last night, I was tearing at the sheets, and the dog wouldn't even stay with me, that's how much I was writhing around. By noon today, I was fine. I tried to stress to her it was just for 2 days (the Thursday evening/Friday morning of my last 2 cycles)--no more. Glad DH was out of town--I wouldn't have wanted to keep him awake. For now, I'm just tired from a restless night, but not really in pain. And it may just be me and this won't happen to anyone else. Whatever they prescribe, I'm all for being knocked out those few hours!
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See? That's what the Neulasta pain has been like for me. Writhing in pain is exactly the description I'd give it. Mine lasts about 12-15 hours, too. I'm sorry you've had to deal with it, hopefully the rest of us won't necessarily have it. Take care and feel better - you're almost there, just one more to go!
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Yeppers that nulesta shot is a b^tch. Since I am doing DD taxel I have to have it with Taxel as well. The only thing that calms it down to a respectable level is Hydrocodone. Last about 2 to 3 days then I slowly but surely climb out of the chemo pain and fog. Little pian here and there but nothing as bad as those couple days after that shot. 1 more to go June 28th!
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I hope you all have better days soon with the SE's.
I was scurious, as children we go thru a series of shots for immunization to attend school and prevent mumps, measles ect.. Do we have to go thru Reimmunization after Chemotherapy, since our chemotherapy is wiping out our immunity? I attempted search for details but didnt see anything regarding the potential of needing reimmunization after we chemo.
Good vibes for everyone!
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Good question, urdrago! I found this research article, hopefully it helps: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46856.... And, here's one from MD Anderson: https://www.mdanderson.org/publications/cancerwise...
After chemo, it looks like we might want to get boosters for Tdap, check titers for HepB, and get the flu shot this fall. Also, it mentions that people who have neutropenia should avoid those household members who have recently gotten the nasal influenza vaccine (the shot is okay). And we all should avoid infants who have gotten the rotavirus vaccine until 4-6 weeks later. Oral polio vaccines should not be given to our household members while we are on chemo. As with everything, I'm sure your MO can tell you best, though!
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thanks GAwarrior, ii go to my MO this next week so im going to ask.
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hello to all... I had my 12 taxol last week and I will start FEC at about 2 weeks. Any experience????
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Catching up with all of you. Sounds like most of us are doing relatively well.
Urdrago- Glad the shingles are winding down. Be on the look out for random nerve pain. I still routinely get shooting pain in a few spots were I had them years ago.
LIFE - sorry to hear about the pain. I've been counting my hydrocodeine left over from surgery and will probably need 4 more tablets to make it through chemo/neulasta pain. It's on my list for next MO appointment.
Positiveno - I hope you all do update on here with Rad information. I'm not 100% sure when I'll start. My last chemo is 8/7 so I'm hoping sometime in August as well.
Binge watching ......I'm doing The Americans but ironically only when I'm at our Michigan house since I can't stream it here in Canada.
Engine- Happy early birthday and what a great idea fundraising for the site.
This round was the best so far for me and SE. I feel like I have the medications all figured out and really only had fatigue and taste issues this round. I was able to enjoy my trip to Chicago moving son into his adult life and off our payroll. I even felt great and loved our night out at Hamilton.
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Engine, happy birthday, hope u take the time to celebrate,
Duffyzmom, I have some already and wasn’t sure if it’s the shingles or neuropathy..
Hope everyone had a great weekend .. Happy Father’s Day to all .
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Thanks, everyone. My birthday is actually next Friday, but my wife's second infusion is scheduled for Wednesday and she doesn't know how she'll be feeling that day.
She is still draining a little from a small spot on the incision. I think she should call the surgeon again on Tuesday if it is still happening to see if they should go ahead with chemo on Wednesday.
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LIFE, sorry about your pain - right there with you. The only thing that works for me is RX Tylenol with codeine. I'm hoping to avoid it on T.
Dee, hoping you weren't in too much pain this weekend!
NoteRed, welcome. I don't think many (any?) of us in this group have had FEC, but if they have, I'm sure they'll pop up and answer you. Good luck!
Duffy, glad this round of T was okay for you. I read on another board that people who had AC (or something else) first, can have issues for a few T's until the AC leaves our body. Maybe that's what's happened for you and the rest will go more easily. Fingers crossed! It's nice to hear that you could enjoy Chicago and Hamilton. I think we all get a little boost from hearing each others "positives".
I had an awesome weekend - I feel almost normal except for my poor, sore, fingertips. It even hurts to wash the dishes. Oh well, I'm excited to start T on Wed (I just want to be moving on and counting down to the bell ringing).
Engine, good luck to your wife if she starts chemo again this week. Hoping that last little drainage will stop before then.
Have a good, SE-free week, everyone!
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