Starting Chemo in December 2016
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summer2016, congrats. Yay. Hopefully your side effects won't be to bad. I gave one more T/C to go it will be my 6th. I can't wait to be on your boat.
She'll. , congrats too. Everyone is so strong for going through this.
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CCNC and Not Very Brave
Yes, it seems we are about the same point in treatment.I go for Round 4 on Thursday Feb 16 if all my counts are okay.I get Herceptin every week through a 30 min infusion with Benadryl before. From what I have been told this will continue every week until next December (1 year). I would also be concerned about doing a larger dose of this drug because it kind of makes me dizzy.The dizziness usually goes away after about 30 minutes but still a larger dose could make that worse and I drive myself to weekly Herceptin and just have family or friends go with me to my big rounds of all 4 drugs.
Hair is kind of odd.I have been noticing more stubble which makes me think it is growing but looking at it I can't tell any difference other than more baby fine white whispy stuff.You are correct I expected it all to fall out but some of it never has.Body hair has thinned but again it hasn't all fallen out.I asked my MO when I can expect hair to grow back and she said 3-6 months are finishing chemo…I had heard as early as 3 weeks after but I guess that isn't correct.Seems very depressing (not to mention hot) to think I could be still wearing hats this summer. UGH!
GI issues are out of control and it is almost time for round 4.I didn't seem to get any reprieve this round from the D.
Yes, I am meeting with a second Plastic Surgeon tomorrow to talk about BMX.I didn't care for the first one and she didn't seem very confident in her skills.Regular surgeon wants to do surgery 4 weeks after last round of chemo so that is around the end of April.So have to get PS on board and a plan of care.I am terrified of this part of the journey.
Yes, I am trying to work full time through this but I am not sure I will be able to if the SEs are worse this next round...
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Thank you Hopfull2! Am so happy to have them behind me. Looking forward to seeing all of us done!!!!
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glad some are finishing up. It has gone quickly in some aspects.
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Ok so I have a 99.3 temperature. Hoping it's nothing. Bjt I'm not usually above 98.6
What does this mean? An infection? I will call doc of its over 100.3 bit getting Nervous now...what would the hospital do or check?
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Thinking about you Scaredashell. I was also told to call the dr and/or go to emergency with fever for the reasons Gingkoleaf mentioned. Hope it has come down!!
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thanks for your kind words. No fever this morning. Thank goodness. I am pretty done with this chemo stuff by now. Waiting to get my life back to normal. Happy Valentine's Day everyone
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So I'm 6 days out from round #4. My fingers are getting worse
. My MO decreased my taxotere dose last week after I told him about my fingers and I did ice them during infusion (even though MO isn't convinced that does much, but I did it anyway). But they've been getting worse, like this morning when I woke up, they were all tingly and they haven't done that before - usually just hurt when I push on the finger tips, but this morning they hurt like when your hand falls asleep and then the blood rushes back to it and gives that 'pins and needles' sensation. I can't do buttons, I had trouble opening a can of pop yesterday and I have trouble with zip-lock bags, both opening and closing, untying knots and picking up small objects. While it seems a lot of neuropathy is temporary and goes away after treatment, there are those that suffer permanent damage and I'm wondering if it's worth it to continue. I would still continue Herceptin and start tamoxifen, but I just don't know if it's worth it for 2 more rounds of chemo. Not sure that it will accomplish that much more (I'll have to ask MO and do some research about 4 rounds vs 6 rounds) and if my fingers keep getting worse, I'm not sure that it would be worth it for a minimal gain in potential survival. My husband on the other hand thinks it's worth it to get my potential recurrence as close to zero as possible. I complain about my hands to him and he says, well it's better than getting cancer again and/or dying. Well, yes, that's true, I'll take this comparably minor inconvenience over that any day, but if a chance of recurrence is pretty low at this point as it is, then is it worth it to keep going, especially if my fingers get worse?0 -
I feel exactly the same! I went in last week because of so many SE's - with the intention to possibly quit the chemo (I've had 3 rounds of 6 planned). I often wonder if I'm either complaining too much - and therefore they discount my complaints - or, perhaps, not enough - so they don't realize how serious they are!
I am all about doing whatever I can to NEVER do this again. And I can deal with pretty much whatever if it's just for now and has a good result. My problem is that I don't want to do things that may or may not change the outcome if they leave me with lifelong problems.
Peripheral Neuropathy can be cumulative - and possibly permanent. I notice my feet feel like they are burning within days after treatment. My fingertips are alternately sensitive or numb. It gets better before the next round, but it feels a little worse each time.
My husband also says to do "everything" and doesn't understand why I would consider less, really. I know that the lump is gone now. The NP at the office could not feel anything, either. I'm still facing surgery, radiation, and hormone suppression down the road.
I just want to be as healthy as possible - now and for the rest of my life!
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I hear your concern about neuropathy. I have the same worries and took that to my onc a couple of weeks ago, since I will be starting the 12 week Taxol stint in about 6-8 weeks from now, along with Herceptin , which will continue for a year. Neuropathy seems to be a common SE. I told her that it can. Not. Happen. For reasons. We will definitely Ice but she also gave me prescription for a B complex vitamin called Metanx. I'm taking it now, in advance. You might look this up and ask about it. I will do anything to avoid neuropathy
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Jezikah------the only thing that helped with my hands and feet have been methylprednisolone 4mg (6 day dose pack) plus more steroid pre chemo. You saw the burn photos I posted of my fingers well my feet were the same and I have had severe pain in hands, fingers, feet and toes. I will say that right before treatment #4 my hands and feet were beginning to feel more normal---less pain just a few pins and needles here and there and oh heel pain. Felt like they were going to return to normal! They are currently getting bad again after my 4th treatment. I have 4 more days of methylprednisolone dose pack----am hoping for the best. Did your doctor mention this dose pack to you at all? Perhaps it would help!
Between my hands/feet and the every 20 minute day and night hot flashes I feel like I'm going to lose my mind! Even getting a little down about it all. Just can't picture life with these hot flashes going on and on as they are unbearable---No Sleep No Relief and horrible. And if Tamoxifen is supposed to make them worse I don't know how I will manage!
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Argynis - I asked my infusion nurse about the Herceptin shot and she had not heard of it. They don't do them, she wondered if it was a clinical trial??
Dizzygirl good luck this week. It took over two weeks this time for my GI to get almost back to normal, just in time to get smacked again on Friday. I am going to try the 3 week Herceptin treatments to see if I can tolerate them. The thought of going every week for the rest of the year is just too much for me right now.
Jezikah - I understand your fears on the neuropathy. So far my toes have been affected but my hands are doing ok. It is a scary thing and I totally understand where you are coming from. There are such crazy and random side effects with the mess and I want quality of life after this. My tongue went numb with the first treatment, but it has come back. I also lost the sensation to pee immediately after the 2nd round but that has come back as well. That one stumped the MO I think. I was a little freaked out. My toes have improved since the first treatment also. I dread that tingling that happens after treatment because you wonder how much damage is happening. Hang in there.
Notverybrave - good luck with your next cycle, hope the side effects are minimal so you can finish the full treatment. I couldn't feel the lump anymore after my first dose too, but the doctor didn't confirm until after the third treatment.
All, I have seen various comments about nails in the thread. My infusion nurse said to keep my hands and feet out of water as much as possible, (no dish washing (which isn't a problem for me I'm a dishwasher gal) and no soaking in the tub unless hands and feet are out of the water. Which kind of makes sense since the nails soften when they get soaked, it might cause problems for nails that are already weakened. Just a thought.
Good luck to everyone with their next treatments and congrats to those who have hopped of the chemo train.
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CCNC - I am undergoing treatment in Europe and subcutaneous Herceptin is standard of care here at my hospital, but some hospitals still force you to do the infusion as they can charge the insurance companies more money.
I just checked and it looks like Herceptin SC (subcutaneous) is only approved in Europe and not (yet?) in the US.
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scaredashell07: I'm part of the "Starting chemo in Nov 2016" group. Just finished my 6th and final round today of TCHP. I got fevers of 101.2+ every chemo round. The fevers lasted 1 to 3 days then went away by themselves. Otherwise, my temp is about 99.5 during the first 10 days after chemo.
The first time I got a fever, I called the MO's office like I'm supposed to (for fevers of 100.5 or greater). They put me on antibiotics and sent me in for a urine test, blood test, and chest xrays. All came back negative. (One possible side effect of the antibiotics was ligament damage and my right calf developed spasms and cramping, which fortunately went away after about a week.)
Since I didn't experience any other symptoms with subsequent fevers, I didn't bother calling the MO's office. I did let them know (after the fact) during my follow up appointments.
I assume I'll have fevers again from this chemo round. I'll just wait it out and take tylenol to bring down the fever. But I'll call the MO's office if I have other symptoms or if the fever gets too high.
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Staymom-- no hair growth yet. I'm 4 weeks PFC tomorrow. I cold capped and am actually still losing a couple combfuls of hair with each washing and lost more lashes this week.
Jezikah--I know how you feel about permanent damage. I had that thought last month. The two weeks ago I was wondering about the watery eyes and now it's lymphadema. Seems like it never ends!! I have 10lbs of fluid in my left arm and legs that showed up this week and was told today it's a side effect of Taxotere that could last up to 3 months post chemo. It's so uncomfortable and getting worse everyday. It's frustrating to be brushed off and labeled a 'side effect' when we actually have to live with it and know some of these can be permanent.
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I just wanted to remind everyone to take any fever seriously unless you've been told otherwise. I went in for bloodwork after the first round and had Neutrophils of only 52 so was sent home with a prescription for an antibiotic and advised to avoid crowds and monitor temp. I got a fever on the way home! They gave me until the next morning to see if the antibiotic would kick it - nope. So on to the hospital for blood and urine cultures and chest x-ray - by then the Neutrophils were 0. I was kept there for 3 days and given strong IV antibiotics and Neupogen.
The oncologist explained that between the damage to the intestinal tract from chemo and the lack of Neutrophils, bacteria from your gut can escape into your body and set up shop. It is very serious and can lead to sepsis - which if not stopped can lead to organ failure and death. We really need our WBC's!
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Whelp.....tomorrow is my 4th infusion. My Dr. has ordered additonal fluids to be administered 4 days after infusion as round 3 was horrible. Sour stomach, extreme bloating, fatigue, light-headedness, dizzyness, disgusting taste issues (ice didn't work for me) and just an overall crappy feeling. Unfortunately, 3 days ago I begin having very slight numbness in my finger tips
. I'm hoping that the additional fluids will help round 4 not be as bad as round 3. Not sure what will be done about the slight neuropathy, but I'll be discussing this with my Dr when I follow-up with her next week.
After my 3rd infusion my brows are barely holding on. There's just enough left for me to use as a guide to pencil in the rest with a brow pencil. I'm hoping I hang on to my lashes, but I won't be holding my breath
Anywho........I'm still holding on. Not looking forward to tomorrow and any potential side-effects in the days to come, but definitely glad I'll be over the mid-way hump.
Thanks for letting me share.
Dacia Rogers
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dcdrogers - good luck with your 4th infusion I do hope the additional fluids help. Yes - once step closing to the finish line. Hang in there!
Summer2016 and Shell72 - congratulations on finishing your last cycles of chemo!
I have my 4th (and final) infusion today. So, really looking forward to getting this one behind me. Next step on this wagon train....rads. Not thinking about it yet....just trying to stay in the moment and face today's challenge. Good news is we had a beautiful sunrise here in Central Illinois today...so I'm hoping that means I'll have no issues during my treatment. Hang in there everyone.......it's going to get better every day.
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NotVeryBrave--I'm sorry you went through this and thank you for passing on the important info!!
SunriseIL--good luck with this last round and congratulations!!! I'm 4 weeks out and still dealing with side effects but knowing mentally it's for the last time, it makes it easier to get through.
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For those of you with the watery eyes SE, my MO recommended that you used a warm compress on your eye in the morning. Then gently massage your tear duct (in the inner corner of your eye). This helps unblock the build up of gunk from chemo. I'm going to try it later when I get home. I've had this SE non-stop for three weeks
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Thank you ILSunrise! And best of luck today with your infusion! Hang in there!!!
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sunrise, good luck with your last treatment and congrats. U did it. You made it through this horrible storm.
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Had Taxol #2 Wednesday. So far no signs of neuropathy. Chemo brain is real though. I missed my Neulasta shot because I just completely forgot to go. I knew I had something to do but couldn't think of what. The office was trying to call me and they called my parents to have them check on me. I had everyone worried. I finally called them after my dad came over and told me he had received a call from my dr. I had no explanation but told them I would try to remember to come first thing the next morning. I feel like I am in a constant fog. It is still better than AC though. Just 2 more to go! Yeah!
Keep up the work ladies. We will overcome!
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Had chemo round #4 yesterday (TCHP). Glad to have it under my belt and almost had to delay due to Platelets and Hemoglobin being too low. The steroids and rest Wednesday afternoon made the platelets come up a bit but Hemoglobin is still low although not low enough for a blood transfusion. MO decided we need to push through on schedule. I hope these issues don't make the fatigue SE worse this round.
I saw a plastic surgeon on Tuesday for a 2nd opinion and I felt she was a better match. Will be having a bmx late April or early May. Having expanders placed and the swap will come after I finish radiation. Anyone else having surgery after chemo starting to think about it and get organized?
I see a lot of people are suffering with neuropathy as we get farther into treatment. I have only had it come up in my toes and only last for a day or two but I worry about my fingers as I work on a computer 8.0 hours a day.
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sc I hear u on chemo brain. I forget things all the time. Last Saturday I forgot to take my daughter to her ballet class. I just completely forgot she had class that morning. I felt bad.
Dizzygirl, I will be having surgery after chemo. I had surgery before chemo but only for my right breast. Now I will be having surgery on my other breast just for peace of mind and expanders put in on both. I'm nervous. Feel like this journey is never ending.
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@ILSunrise, thanks for the good luck wishes. Round 4 yesterday and it seems like the SE are coming along a little faster this round. Dry mouth and nose last night which usually doesn't occur until around day 2 or 3 after treatment. My hemoglobin was also down a little to 8.5. Not enough to stop treatment and no blood transfusion this time. It's been coming in on the low side each time they do bloodwork before treamtent. This would explain the increase in fatigue and overall feelings of illness with each treatment. I'm not looking forward to having a transfusion, but it will help me feel better and get to my 6th round I'm all for it.
I'll be meeting with my MO next Tuesday for my usual follow-up after infusion and I know that she's already scheduled me for extra fluids. I'm a little nervous she'll probably order up blood on the same day. I can only imagine how I'll feel by next weeks meeting since the SE are definitely kicking in sooner this 4th round....as it did the 3rd round.
Hope you ladies (and gents if you're reading this) are all doing well.
~Dee
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Well the good things - it's warm and sunny here! And I get a 3 day weekend! Yea, city job
Also, booked a work trip to Vegas for next month. MO was OK with pushing treatment #6 one week so I could attend the conference. It will be 3 weeks after treatment #5, so *should* be over the worst side effects and have energy and be able to enjoy the food. Bad things are my fingers are still hurting (I couldn't peel a cutie orange at lunch time today), everything tastes horrible and my mouth hurts. But I'm feeling better each day energy and GI - wise. Although not much for GI issues when I'm barely eating anything
I just really appreciate the support on here and sharing of experiences as we all go through this together. Congrats to the ladies who are done or just getting done with their chemo - that's so exciting!! And to those who still have surgery and/or radiation in front of you - good luck! I feel fortunate that I was able to avoid radiation and do a direct to implant surgery so that I only had the one surgery. I am so pleased with how it turned out and have healed up quite well - I'm 4+ months post op right now and almost at 100% - just a weird spasm or nerve pain here or there - and of course the scars, but those are slowly fading. I'd probably do surgery again over this chemo crap...
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Dacia - I also felt the SEs much sooner with round 4. I had to go home and go to bed right after, I felt so beat and I had the mouth issues and taste/GI, fatigue, everything 1-2 days sooner than previous rounds. And it's also lasting longer this round. I'm on day 9 right now and still feeling pretty crummy, although better each day.
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Had my first DD Taxol on Thursday. Not as bad as the AC. Glad to be switched over. Got a new SE though. My hands and feet are swollen and the creases on my palms and soles of my feet feel like paper cuts. Opening and closing my hands hurts and walking is pain in every step. DH bought some Lidocaine for me. That took the edge off. Now I'm on the hunt for some lotion with 10% Urea in it. I hope the pain eases over the next two weeks. I'll have to buy Lidocaine by the gallon if this keeps up for the full 8 weeks.
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Anyone having sinus type symptoms? Don't mean to make anyone sick.....here goes....I have lots of greenish bloody mucus that doesn't seem to go away and headache if I stop Claritan. Not sure if it is my body just with the chemo or a sinus infection as I never run a fever with sinus infections (have suffered chronic sinusitis for years which has been much better since I stopped drinking milk and limited cheese).
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