Chemo starting April 2018
Comments
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Gawarrior, thank u for sharing. I seen that and going to ask ..Curious how dna of tnbc missing ptpn12 gene and how that impacts my overall risk of tnbc reoccurring.Ive been doing a lot of reading over the weekend, to get ready for Q/A with doctors. Nervous about surgery options and outcome..ugh
Btw: Is anyones else hair coming back ?
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Congrats Life on getting the port out. So glad you are feeling better by the day.
Engine, best wishes to you and Janice, chemo has been a rough ride for you guys.
GA Warrior, thank you for sharing. I went into surgery boards to prep question for my consult on wed but then got scared/anxious reading about different experiences.
Urdrago, how are you doing? I do not have any hair growth. Infact I lost the stragglers from AC around Taxol 3. Urdrago, will you be willing to share the questions you have prepared for your consult, specially if it is related to TNBC or let me know where to look? My questions are more general in nature now when I think of it.
Last week was the toughest till date on Taxol. I am hoping for fewer aches and pains this time. Taxol 9 in 5 hours.
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Frog, I hear you about being scared of surgery. I read the thread about what you wish you'd known before your mastectomy and it scared the heck out of me. I had to stop reading and go back another day. So sorry you haven't been feeling well this round of T, hoping for NO SEs for you this time. At least you know you're winding down to the end of chemo. Good luck with your infusion today!
Urdrago, I'd also appreciate seeing your questions, especially as they relate to TNBC. I don't know abything about TNBC missing a gene, but I'm doing a search for it now. I have a patient who is a 6 year tnbc survivor - she convinced her dr (MO? PCM?) to put her on Metformin for a year following her surgery/chemo, due to studies. My MO seems willing to do that for me. If yours won't and you're interested in trying it, there is a supplement called berberine that is supposed to mimic the effects of Metformin and some ladies are taking that. I also saw studies about taking low dose aspirin to help ward off recurrence. RE: hair - mine isn't necessarily coming back, but the 7ish % I have left on my head seems to be growing longer. I haven't lost any more of what I have (I still have hair on my arms and some on my head), except for eyebrows. I have a few straggler eyelashes left, too.
Engine, sorry to hear about Janice's diarrhea. I haven't had to take immodium for chemo, but have taken it in the past for IBS. What is she concerned about? Impaction, maybe, since she had it that time at the beginning? She can cut the immodium in half and take half of one - maybe that would help, but not plug her up too much?
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HI everyone, GA Warrior and any of you that are having an upcoming mastectomy I will be more than glad to answer any questions. I wont lie, it's a bit rough at first but you all have been through chemo, you can do this!!! I started taking a low dose aspirin after I got through surgery. I didn't qualify for a study but was advised to take it Taking vitamin C and eating protein, lots of fruits and veggies will prepare your body so you can go into surgery as strong as possible. No question is off limits my friends!
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Frog / Gawarrior, this is what I found regarding DNA, which has me curious about long term treatment.
https://www.google.com/amp/s/medicalxpress.com/new...
https://www.medicalnewstoday.com/articles/320871.p...
Also Im having a hard time with surgery and knowing what is best for me and recovery so I can return back to my normal life..the most important is how many surgeries will have go thru all together? The surgeon at u of m waits 6 weeks post chemo. Why ? as some only wait 4 weeks.
I havent lost any more hair but the little bit ive had in my head its growth is enuff that ppl at work ask if my hair is coming back. I have a few eyelashes holding on, and eyebrows i powder on..
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undrago, I believe the wait is to be sure chemo is out of your system to decrease the chances of infection. Take this time to rest when you need to, exercise if you are able, and nourish your body with healthy food. I know it's hard, try not to get too far ahead about how many surgeries. I know it seems like this will never end. I hope you are feeling well and let me know if I can help in any way.
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debal, before u went into surgery did ur doc. Define clear margins?
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Clear margins are usually taken care when a mastectomy is done. I'm sorry if I am not answering your question correctly. Do you mean did the Dr tell me how much tissue is a clear margin?
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Yes. Did he define it? I have read thats the rule is not touching ink.
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He did not define it ahead of time. I also read some institutions have 1mm others have 2 mm as the closest margin. I looked at my path report and the closest in my case was 7 mm.
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DebAL. Will u have to go thru radiation? I ask becuz i read ur diagnosis and it looks like ur nodes were clear? I read that most doctors dont like to do implants if radiation will be part of the plan. Its hard to pick mastectomy or lumpectomy plus i really dont know yet what my options will be..
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Yes I was told no radiation since nodes were clear.. I am not totally sure about radiation and implants. For some reason I thought I saw a conversation about that on another thread. If I see something I will definitely let you know. Have you had your surgery consult yet?
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I go to U of M tomorrow morning 8am all day clinic..
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I will be thinking about you. Bring a note pad so you can jot things down. I think you will feel better once you understand your options. You are right, the decisions seem never ending sometimes and not always easy to make. (Hugs)
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She took one full does (2 tablets) this morning. No more diarrhea. I just hope it doesn't go the other way again.
This has been a rough ride. I think a lot of it has to do with the fact that she had so much chemo 16 years ago when she had AML. It was a lot stronger too. The end result, I think, and one of the doctors mentioned this the other day too, is that her marrow is slow to respond and goes neutropenic pretty quickly, even with the Neupogen.
We've been doing some research about 4 x 6 rounds of TC, The onco told us we could stop at 4 if she was having a hard time. I think three hospitalizations, including one for sepsis meets that criteria... But, it is something to discuss with the oncologist. I have some research if anyone is interested. I'm not necessarily advocating this, but it something to consider in her case, I think.
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Life, my first Taxol treatment will be this coming Friday. 4 DD treatments, just like you. Bought 2 pairs of socks with gel inserts to ice my feet and hands. I think my MO wants me to continue with the Neulasta shots. I felt bone pain on Friday for the first time. I didn't like it at all, as you can imagine. Couldn't sleep at all until I took 2 extra strength Tylenols. Then another 2 in the morning and at the end of the day. The pain disappeared after that. Damn, it hurt! Did you have pain on Taxol? I am not looking forward to it...
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Yes. Between the neulasta and the taxol it was not fun. I would get the bone pain from the neulasta within 24 hours after getting the shot. Then I would start feeling the joint pain from taxol a couple of days later and that would last three to four days. Then every once in awhile I would get a shot of pain in different places my legs. Then I would get an arthritic feeling in my hands about a week later. Then I would be fine for 3 or 4 days and then it was time to go back. Taxol with neulasta sucks! But I understand why you have to do it. It does keep your counts up and keeps you healthy. I was also going to purchase those socks but I have wide feet and was afraid they would be too tight. Glad to hear that you are pre-planning so that your feet don't get worse as well as your hands.
It was not fun! But what helped me get through it is I kept telling myself 4 to go 3 to go 2 to go Bamm done! Now I don't know why but every time I did any chemo the first week I was so depressed and so discouraged and I kept saying oh my gosh I can't do this. And then the next week I start feeling better and have more of a positive attitude toward it. My poor significant other had to deal with that first week every time. I wasn't the easiest patient I guarantee that. And of course because I don't like to take pills I would fight him taking the hydrocodone until I couldn't take the pain anymore. Then I would agree to a half of one but would eventually give up and take the other half as well.
What I noticed most about taxol is my energy level would just get less and less each treatment. No nausea! And some of my taste buds came back to where some food started tasting good as well
However, you could be one of those people that taxol doesn't affect like that. I have read on the chat board where some women didn't have any problems with taxol. I'm hoping you are! Plus I'm kind of a sissy lala so you might not be as in much pain as what I thought I was.
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LIFE, glad your port is out, you must be feeling good about that.
DEBAL, I'm actually not sure if I got new hair or just old hair that stuck around through all the chemo, but I have baby fine thin strands, not anything that covers the bald look, and nothing to get me excited yet.
I had my "dry run" for radiation today, and start the hormone pill and first round of radiation tomorrow. For some reason, (What the Hell is wrong with me) i felt in a huge depression going in there this morning, and all but ran out the door. I cant bring myself to do the small talk chat, or be friendly. I cant stand them positioning me, touching me. I feel like a freak, an oddball. I cried my eyes out today, and im not a cryer. Was i fooling myself into think i was done after tne last chemo? This next stretch ...that of radiation feels like an assualt on my mind, body, and my mood.
Engine, with Imodium, 2 usually works wonders, and doesn't make you go the other way to be constipated, but Janice may notice she is thirsty more after taking it. The reason it works is that it dries up the excess fluids in the intestinal tract. Hope she contines moving forward without further setbacks.
Frog, ...good thoughts, hug and best wishes to you. Hi to everyone else, I'm not keeping up well on here right now, but praying for all.
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DJT, there is nothing at all wrong with you. I am sorry that I cannot offer any advice since i did not do radiation. As a nurse, if you were my patient i would probably try to talk to you too. Once i picked up that you weren't up do it i would ask what i can or shouldn't do to help you get through this. Sometimes its hard to read someone's mind. Not much can be done about the necessary touching for the treatment but definitely the small talk. They can do what they need to and be done. Just kindly tell them what u want or don't want. Most in healthcare deal with patients on many different levels. Some will pick up on it, some will need to be told and that's ok. I know it seems like this road never ends sometimes. Take care and hang in there. You are moving forward.
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Djt I don't know if this will help but I was fascinated by the technology involved in rads. Amazing what human beings have done—truly amazing. And the techs at my tx center were friendly and funny and the appts go so quickly. You're really only in the room 5-10 minutes once you start the regular treatments. Would it help to plan treats for yourself after tx? Your favorite coffee treat? Ice cream? Chocolate? Do you have something to look forward to when you're finished?
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DebAL, thanks for saying you'll answer surgery questions.What mg of aspirin are you taking - the really low-dose (81mg?) they recommend for people over 50 to help avoid cardiovascular problems or is it stronger than that? Also, I'm going to ask the BS about a direct implant after my UMX, but I suspect they'll push for tissue expanders and an exchange surgery down the road. How long were you out before you could return to work? I am having the right breast removed and am right-handed, so I was wondering how much that would affect my job as a dental hygienist during recovery. I probably raise my arms/hands to shoulder level during the day, but not much higher, but I do have to push a heavy xray head around! I hear 4-6 weeks recovery time and am thinking I might need the full 6 weeks if I'm not supposed to move my arms a whole lot.
Urdrago, too bad that study isn't far enough along that we could volunteer for a trial.
InnaB, I've iced during 3 of my 4 ACs and all 5 of my T's. I'll be happy to answer any questions about it! I haven't had a single second of bone pain on T - my onco nurse mentioned that my taking 30 g/day of L-glutamine to ward off neuropathy on T was what was keeping me from having it. She said those on l-glutamine don't seem to have the bone pain. I have also continued to take the Claritin D (daily) that I was taking while on AC. Believe me, I had Neulasta pain twice while on AC, I don't want that again, but T has been a breeze (although I'm getting it weekly, not DD). You might ask for your MOs opinion on the l-glutamine/bone pain (I wasn't taking l-glutamine during AC, so I am not sure it it would help the Neulasta pain). FYI, you'll need to have several ice packs available so you can swap them out every 20-25 minutes during the infusion. Ask your chemo nurses for a blanket because icing makes you cold all over (I wear a long-sleeved shirt and long yoga pants, plus have the blanket). Also, ice for at least 10-15 min before and after the infusion. Good luck!
Engine, I hope Janice is doing okay. I could see where her prior chemo would affect her marrow. Did she just finish her #3 or #4 TC? Tough call - deciding whether to stop at 4 or go to 6. Good luck with your decision!
DJT, as someone who deals with nervous/scared/introverted people who simply don't want to be in the dental chair, I second what DebAL said. Tell the nurse (kindly) that you would prefer no chitchat, that you are really uncomfortable with all of this and it would help you to stay calm if you could just focus on what needs to be done and not have to talk. I always understand when someone requests this. Some people aren't good about picking up cues from patients (I have 2 coworkers who would just chatter like squirrels without realizing the patient was struggling unless they were told). Healthcare workers understand, but we usually try the small talk thing first, to put people at ease. Clearly, that will backfire with you and they need to know that. At the end of the first procedure, you can thank them for not talking and request they put "no talking" in your treatment notes. Also, I would still (kindly) remind them at the beginning of each appointment until you've seen the same person a few times and you know they will remember. Big hugs, you can do this!
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Hi GA and DJT,
She just finished round 3 and will have round 4 next week.
So far, the Imodium stopped it yesterday, but it seems to be back a little today. I think the antibiotics are done tomorrow, so that should help too
DJT: Not having gone through this myself, I can only say talk to the techs and nurses. The ones we have had have been wonderful and very kind. My only advice, granted this is a terrible comparison and not at all similar, but when I was on WeightWatchers a few years ago and I was getting pretty frustrated and wanted to stop, our instructor said, "Look at it this way, this is a long road trip from Seattle to L.A. You're now halfway. You've put a lot of miles behind you so concentrate on how far you've come and not on how much further you've got to go." You're past the chemo and once the radiation is done, you're all finished.
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so Im home for the hospital. I had mamogram and ultra sound. Results show tumor has been reduced by half the size and lymph nodes have reduced as well. I need to got for another CT scan after chemo to check on a couple cysts that were present during prior PET scan. There is additional gene testing they can do for TNBC, I will know more when they call to scheduling surgery. Example ptpn12 .found out Im not a candidate for DIEP flap. Not enuff fat along my stomach. So I've choose to do a lumpectomy and it will include axillary lymph nodes level 1 & 2. she will check level 3. Once we have pathology report then a plan for radiation. After I recover from radiation plan next steps for reconstruction.
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GAWarrior, yes, I take 81 mg. Figure I'm at the age where it will help my heart too. I can tell you what I know about direct to implant. If your skin integrity is good and you don't mind being possibly smaller you may be a candidate. I almost went that route but last minute changed to expanders; he felt more accurate placement of implant that way. I didn't care too be much bigger but didn't really want to be smaller than what I was and that could have been the case. I was instructed no repetitive motions after surgery and you may fall into that group in your profession. No pushing heavy xray head around!, pulling, or lifting over 10 pounds. I went back at 6 weeks but was still very careful about what I did. I decided early on that I will look out for myself and that nothing is worth potentially complicating things. Just not worth it to me. Should you find yourself down "expander lane" you may have a choice between choosing behind or in front of the pec muscle. Yes, more decisions but cross that bridge when you get there.
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urdrago, I'm glad you have a plan. I'm sure it was a very overwhelming day for you. It's just so much information. There are plenty of other resources on this forum and plenty of support. I hope you can sit back, take a deep breath, and let your mind relax for a bit this evening. Let me know if I can help you in any way. (Hugs)
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InnaB2016. Well I answered your question earlier but some how I deleted it. Good Gravy! It was pretty long answer anyways. Lol.
So for the short version. Yes. Between neulesta and taxel I did experience bone and joint pain. I would end up taking hydrocodone as nothing else helped for the first 3 to 4 days. Also each treatment I had less an less energy.
Glad to hear you going to ice. I dont think you will regret that decision. The nurses said they were impressed with the fact I could sit there will my feet in ice and hold my water bottles and sleep. Benadryl does that too me. Lol
On the lighter said I experience no nausea and taste buds started coming back.
4 down 4 to go! Yea!!!
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InnaB, I also bought the cryo gel mittens and socks for icing. I saw both my BS and dermatologist this past week and they both were very pleased with the fact that I had no neuropathy nor discoloration or loss of nails. I sucked on ice chips and also experienced no mouth sores, but I was extremely diligent about rinsing with baking soda/salt for the first week or two post each infusion day.
GAWarrior, I will second what DebAL said about direct-to-implant vs expanders. Originally, I wanted direct to implants after my bilateral mastectomy. During my surgery, the PS felt the skin integrity would be compromised with implants so he put in pre-pectoral expanders. At one of my follow-up appts, he said that the final outcome generally is more successful with expanders first, which lets the chest heal from the mastectomy, and then exchange for implants. My exchange is next month. I am almost one month post final chemo and onc, PS, and BS like to wait at least 6 weeks before any surgery.
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Taxol 9 day 2,
3 more to go..... thats all I can think of. Also, my surgery consult tomorrow and the bone pain and the numb sore fingers. Did I mention the surgery consult?? New SE: nails lifting slightly.
Hope you ladies are having a restful and boring week.
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Life, GAWarrior, thank you for your answers! Would you believe me if I told you that both my oncologist and integrative physician told me not to take any vitamins on Taxol? I specifically asked them about B10, B12 and L-Glutamine. I just wish medical community made up its mind about something across the board and stick with it! Grrrrr! So, I got 2 gel packs for my feet and 2 for my hands. I was told they will last for 3 hours. I really hope so... Worsecomes to worst, I'll just put my hand and feet on top of Freezer elements
. Urdrago, good news on your tumors shrinking!
Good luck to the radiation ladies! I think I will follow you some time in October.
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Hang in there, Frog. I am counting the days (10 until last T) and I'm sure will soon start counting the hours. I really try not to wish parts of my life away but I am so ready to be done with this. Working on being patient. . .
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