Starting Chemo in September 2017

Kiwi-in-Thailand

Paulette, yes the swelling started in the feet and then moved upwards. Once I’d started properly on the diuretics, I lost 11 pounds in 2 days!

PauletteK

Kiwi - wow 11 pounds of water in 2 days, that’s a lot of water. That’s scary.

Kiwi-in-Thailand

yep.. I’m trying to stay off the diuretics but I’m gradually getting swollen again... won’t leave it so long this time as it really was pretty grim- felt like my skin was going to split ...

mkn86

thank you travel_girl yes been trying to sleep when i can. funny how things sound simple but can also be very difficult. sleepy/tired? rest. hungry? eat. haha but slowly figuring out what also still tastes good and what doesn't. fruits these days i find are exceptionally sweet. so sometimes i will eat them right before they're ripe.

Meg, the oils that are put in the diffuser you can control how many drops you put in. tbh i don't like the smell of the sleeping "mix" but if it knocks me out without me taking prescription medication, i'll do it!

Thank you Kiwi. yes i was resting in between and carrying things in small quantities just so i don't get too tired.

Day 5 on antibiotics and my right breast still feels heavy. 2 days of antibiotics to go. need to talk to my doctors about this. my only worry is if this is a different cyst from my tumor, maybe it should be drained so that it causes less discomfort during chemo. i mean if it's "pushing" against the tumor then maybe it's also altering results of my chemo.

i hope your weekends were good ones and that the good energy continues this week. :

Travel_Girl

Hey Warriors -- just checking back in for those that still may be around.

I did have my surgery this past Monday the 27th, and didn't have to have any blood transfusions. So happy

i can't bring myself to look under the surgical bra yet -- have to mentally prepare for that ... I am ok when it is someone else's injury -- seeing my own scars, cuts, etc I have a hard time with.

One much needed night at the hospital to get through the anesthesia impact and was home by noon on Tuesday.

Now to wait for pathology reports -- they said due to holidays it will take over a week. Ohmmmm ohmmmmm

Onward my fellow warriors.

OCDAmy

Travel Girl! So good to hear from you and that you are home and recovering. The first time I looked was with the visiting nurse who came to show me how to care for the incisions. I cried and she hugged me and then the worst was over. My incisions were closed with glue. Once the glue came off the incisions looked so much better. Gosh I hated that surgical bra. Take it easy and rest. My PS said to think like a T-Rex...keep those elbows to your side.

rljes

MILk - that made me laugh too about too about your head scarf.  I would have whipped it off and said "better Now">|? 

mkn86

@rljes been reading about your posts in the other threads too. i'm glad your first infusion was uneventful. i hope you're doing okay

travel_girl, glad to hear you are recovering too. rest, take it easy and will think of your full recovery.

Amy, that was funny. i love trex jokes but also sounds very helpful for surgery.

going in for taxol 4 today. MO hasn't confirmed if chemo is pushing through. but also have an ultrasound before chemo. finished antibiotics and my right breast still feels heavy and has fluid discharge. i'll be talking to my MO about it and setting up an appointment with the breast surgeon to talk about this too.

I'll check in again after chemo. I think i'll be awake from the steroids again later happy friday everyone!

mkn86

infusion was uneventful thank goodness.

had chamomile tea this evening mixed with a chinese tea that is boiled with date . i am actually feeling sleepy.

Sweet dreams/good day everyone

OCDAmy

mkn, what are they saying about the fluid?

mkn86

hi amy! At the moment my MO thinks it is tumor necrosis and is waiting for my ultrasound results to see. the surgeon, i will meet her next week. so it's a waiting + distraction game for me for now.

Been using this app called headspace to learn to meditate. they even have a meditation pack specifically for cancer. It helps sometimes.

Milkweed93

mkn - thanks for the meditation app suggestion. I hope you can resolve the fluid issue. That sounds so uncomfortable!

Kiwi - how is your swelling?

rljes - I'll do that response at Christmas, lol!

I'm on the RADS thread, but checking in on those still here. I'm now 32 days PFC and I've developed some edema, not in my arm, but under my arm and towards the back. Lymph therapy has been helping, but its kinda weird. Tender too.

OCDAmy

Hi all, I have a few questions for those of you past chemo. I am 5 weeks PFC and have noticed a few things and wondered if it's just me. I don't see my MO until I'm done with rads. I seem to be having some bladder control issues. I had it a bit during chemo but hoped it would stop after chemo. No pain or burning just control issues. Also I have had a lot of joint aches, more than during chemo, especially in my knees and big toes joint where I have bunions. How is everyone else doing

Travel_Girl

Hi - I am 6 weeks PCF and while I don't have any bladder issues, I definitely have the toe pain. That is a residual from chemo -- can't recall, it has a medical description - I am trying acupuncture to manage it, however, it is definitely a problem.

As far as your bladder issues - did you make an appt for primary care? I might see another doctor for that. As chemo has all kinds of 'side issues' that result - this might be one that can and should be addressed by a regular doctor.

Other issues PFC -- my eyebrows are thinning -- wondering if they are going to disappear all together, fingers crossed. The biggest issue for me is that I am still having trouble sleeping, I look forward to getting back to my quality sleep at some point - I was such a good sleeper prior to this diagnosis and it makes such a difference.

Also I am just over a week from my double mastectomy (yay! past that) -- so that pain/side effect is taking center stage. Drains are out, pain is being controlled by OTC, let the healing continue ... My fills start next week. I am looking forward to working out when i get past the 4 week mark.

How is everyone else doing?

OCDAmy

Hi Travel Girl, I have been wondering how you are doing since the surgery. Glad to hear the drains are out. I am curious how the fills go with those expanders you have, can you keep us updated? I think I am going to see my PCP because I had some joint pain, back and neck issues before chemo and now I think it is all worse. My eyebrows are nearly gone, I can probably count how many are there but I have noticed a few new ones coming in so that is gratifying. I have gotten really good with the eyebrow makeup I bought.

Hoping you and everyone are doing well and moving to the next step in your journey.

Travel_Girl

Yes, I will keep you updated on my 'self fillers', I get my remote controls next Thursday. A tiny bit of control.

I have to get some eyebrow tips - I have never been good at eyebrows, so this will be interesting. I have to find a make up place to give me a make over and focus on the brows. Also, I am done with chemo and once I get past this infection period, I am thinking maybe microblading. I shall research.

PauletteK

I’m going to be 4 weeks PFC this Friday, I take cranberry pill now I worry my immune down I might get UTI. I don’t have bladder issues, but I have more pains especially on my knees. I didn’t have this problem prior chemo. I still have neuropathy on my feet and hands. They are subsidies but I still got my numbness. I’m going to see my In two weeks, will do lab test next Monday. So I think I will see him once a month, then my BS wanted to see me after radiation.

I still bald with no eyebrows, I noticed some of my nasal hair are breaking through, and they are white ! Still have dripping nose and dry skin. I haven’t gained any weight even I have my appetite back, so I’m hoping I won’t lose any weight while I’m on radiation.

Travel_Girl

Paulette - 4 weeks PFC, makes me so happy! You had such a journey.

I hope all of our feet and hand issues go away soon. I have looked on boards and it appears that it does goes away in a few months - not sure how many, just know that most say after a few months time the aren't feeling it anymore. I am hoping that is the case.

PauletteK

Travel Girl - all of use had such a journey ..... I sure don’t want to go through this again.

My feet is getting better I think 60-70 % went away, hands is going a little slower. We have a Facebook private group would you like to join us?

mkn86

hi everyone. just checking back in for september starters. finished dose 5 or 12 this week. had a small bout of D... probably something bad i ate. taste buds are busted but all in all doing okay.

slept most of yesterday. had a bit or sore muscle and mild bone pain yesterday.

but all is okay today and i'm thankful. can't believe christmas is just around the corner.

I hope everyone else is doing fine. hugs all.

PauletteK

mkn, how are you doing? Not good having the big D, be careful what you eat and pray that you are doing better.

Hard to believe Christmas is almost here, I still remember when I first got my bad news in April, then my surgery and started my chemo. Now I’m doing my radiation, time goes by even we are having a rough time.

Meg101

OCDAmy - I'm having bladder issues. I'm dribbling a tiny amount after I pull up my panties. Also, I have to "go" more frequently, but that could be because I'm drinking a ton of water before starting AC. My MO suggested AZO Cranberry pills (from CVS over the counter). It's been 12 hours since I started taking it and the dribbles are gone. AZO also makes an OTC urinary pain reliever. I have used AZO urinary products previously for bladder infections, and it clears it up as well as prescriptions. Hope this helps.

Travel - I'm so glad to hear your surgery went well. The scars will fade with time. They will be ugly at first which is scary, but you'll hardly be able to see them after a while.

Paulette - I haven't been on Facebook since I started chemo, but I plan to hop back over there by the end of the year. I start AC tomorrow, and will have my last infusion Dec. 26th. I have a question for you. Were you prescribed steroids to take the night BEFORE your AC infusions (like with Taxotere?) My MO prescribed steroids to start the day OF chemo instead of the night before. I'm still freaked out about the possibility of puking while being on AC.

mkn - It sounds like you're doing well on Taxol. The SEs you described are par for the course for others on Taxol. I wonder what the difference is between Taxol and Taxotere? Maybe just different manufacturers?

Everybody - Here's wishing all of you a healthy, happy Christmas.

PauletteK

Mag101- I only took Ativan the night before infusion, they gave me steroid on premeds. How many AC are going to do? If you have questions please ask. Let me know when you are ready for FB.

MamaFelice

Travel Girl & OCDAmy-- and any other TC gals out there-- hoping your neuropathy recovers. I have been icing during treatments in hopes to avoid. 3 down and so far so good. My big SE I have had has been with my eyes and vision. It was barely a day's worth post 1st infusion that I wrote it in my SE notes, but didn't mention it to doc. After 2nd infusion the issues came and went over a couple of days, and I made mention to my nurse navigator....and she didn't seem overly concerned since it went away for the most part. After infusion #3 my eyes have been a non-stop issue-- twitching, spasms, tiredness, and sort of a peripheral blurriness.

Have either of you had such eye issues? Seeing my onco on Tuesday for my 2-week check up and it is on top of my list. Thanks bunches! ☺️🙏🏻

OCDAmy

MamaFelice, I did not have any eye issues on TC. I would talk with your MO about that. Just one more infusion left?

MamaFelice

Actually they want me to receive 2 extra making it a total of 6. No reason for the extra 2 except for good measure because of my multiple node involvement. No way we can tell if chemo is effective since I removed active cancer/tumor with BMX and ANLD. Scans pre chemo showed no sign of disease. We are going after the chance of micromets . I am going to discuss the extra 2 in great lengths with my onco this week. Since I am highly ER +, I am wanting to start endocrine therapy and focus I on stopping the estrogen. I hate the idea of depleting my immune system to the point of no return while not knowing if I am even benefiting from the chemo . Such a crap shoot! Any thoughts

mkn86

hi paulette, upset tummy has calmed down after the one incident thankfully. But still taking it easy on the tummy for the rest of the week. and taking probiotics in case taxol wiped out all bacteria in my gut. including the good guys!

I was thinking the same thing. i actually started filling out the calendar today and realized it’s halfway through december. August seems so far away now. i still get into a funk and have spent tons of time indoors but i’m trying to fight it and do things that i used to enjoy.

Meg thank you. that also feels so encouraging to know i am doing well with taxol. Hopefully good tumor response follows! I’m not sure but likely different manufaturers or different ways of getting the meds?

Gearing up for dose 6 this week. Fingers crossed

OCDAmy

MamaFelice, I have seen others get 6 infusions instead of 4 and wasn't sure why. I thought 4 was proven to be just as affective as 6. I admit I worry sometimes with 2 positive nodes that maybe TC wasn't strong enough. You are right it's a crap shoot. Will you also get radiation?

Travel_Girl

Mkn -- keep managing those SE's -- the balancing act of GI issues. Bland eating is the name of the game. You have got this.

MamaFelice - I have found that my eye sight is a bit hit after my 4th round - reading glasses all the time when I could get away with the large font on my phone without it before all of this , I don't wear other glasses.

It could just be my age and/or my fatigue. I was at a Christmas luncheon and a women there said she had issues with her eye sight after #2 as well -- so definitely ask your MO about it. (It was before you posted this so I didn't ask her and frankly I didn't want to talk cancer, so I changed the subject )

As I tell everyone that asks for healthcare advice - be your own advocate - you know your body more than anyone and push for what is off. And do enough research to ask the right questions, every dr. cannot know everything, they are human.

As for the 4 versus 6 rounds of TC -such a personal decision -- all of this treatment is a mix of dr recommendations and your own choice - remember that. If this helps you at all, I had 4 rounds of TC (my cancer was Triple Negative with no node involvement). I had hoped for a complete pathological response to chemo - meaning the tumor was gone after my 4 rounds -- unfortunately - it was not -- almost, just not complete. The surgery took it out and the surgery confirmed no node involvement ... you never know with micromets what might be lurking - so I wonder is/was 4 rounds enough to kill the floaters if it could not wipe out my stage 1 tumor? We never know do we?

I see my oncologist on Thursday as a follow up to the chemo and the path results to talk about next steps. I know personally that if she offers more chemo I will refuse -- not worth it to me for quality of life -- it all comes down such personal choice - gather info, talk to your family and then decide -- once you do decide - don't look back.

Not easy and I am seeing my therapist tomorrow to talk about moving forward - now with 2 BC types lurking in me I need just a little help to work on my 're-entry' <into mainstream life> as my daughter calls it.

PauletteK

Travel said the words in my heart “quality of life -- it all comes down such personal choice - gather info, talk to your family and then decide -- once you do decide - don't look back.“ I feel the same way. Could be I’m over 60 so I look at life this way.

My vision is not as good as used to be, I read it will take months to get better, so I don’t even bother to recheck my vision. 4 weeks PFC I still have some of the SE, my taste buds is not back 100% yet, still have neuropathy on my fingers and feet, nose is still dripping, energy is back in 60-70%, still bald!