Anyone.Starting Chemo in October 2016?

Connie1230, how are you today? I so hope your doctor(s) can figure out what in the heck is going on that's left you sick for so many days.

Barb, I haven't been able to use my port for blood draws since the darned thing requires clot busting every time, but you should be fine. Mine is the port that had everyone gathered around in the infusion room ("Have you ever seen a port do that?") and the surgeon saying, "I've never had that happen in 20 years."

Miles, that is a great article. I'm embarrassed when people say how brave and strong I am because, as the author says, everything we go through isn't really our choice. We're not leaving a safe place to race into danger's path to rescue someone. We're simply going through some challenging poop to try to survive. Are you nauseous, in pain, exhausted, all of the above? {Hugs}

Sorry that I've offered little support of late. AC#3 and #4 really did a number on me. I'm a week out from #4 and still experiencing a racing heart and labored breathing if I walk the short distance to the mail box or wheel my dumpster to the alley. I had multiple days where walking through the house to take care of pottying myself or the pups required incredible willpower. Lots of binge watching happening at this house.

I saw my MO yesterday and we still plan to move forward with starting Taxol next week unless the cootified skin on my left foot worsens. Am I the only person who thinks of hoof-and-mouth disease running rampant through cattle herds when hearing about hand-and-foot syndrome? 🤔

I'm concerned about blasting my body with another poison when I've felt like I needed to be in assisted living the past 3 weeks, but I'm stronger today than yesterday. Fingers crossed that trend continues and that none of us on the AC+T plan have scary reactions as we move into the Taxol phase.

Lyn

Hello Ladies – it’s been a while for me – it seems every
time I sit on the couch to start writing a post, I fall asleep! (no offense to anyone's post!) Today, trying
something new – posting from my office at home before I make my way to the
couch. So far, so good.

Yesterday marked a milestone for me – last AC treatment and
now it’s on to Taxol & Herceptin for 12 weeks starting December 27^th.
I’m officially at the halfway point as most of us are marching towards. Just
think – how many of us thought this day would come when we started way back
when? I know that some of us are having a harder time than others but we are all
still soldiering on. I can’t say it enough about what a strong bunch of ladies
we have in this community.

My MO did a whole bunch of bloodwork this go round mainly to
see what was up with my hemoglobin. She confirmed that I have Thalassemia –
inherited from my parents. Good news is eating a lot of steak, kale, spinach,
beans and the like have boosted the hemoglobin to almost where it was when I started
this journey so will continue through the next weeks to keep it up. Supposedly
Taxol is less “taxing” on the blood but we shall see. Honestly, I really don’t
mind having steak or red meat a couple of times a week.

Like most of us moving to the Taxol phase, I peppered my MO
and nurses with all kinds of questions yesterday. My MO recommended B6 (100
milligrams) as well as glutamine once a day to help with neuropathy. She quoted
a clinical trial being conducted in Japan that showed positive results. She was
not enthusiastic about icing or using gloves for hand and feet that hook up to
a tens machine (I read about that in the group for those on Taxol that is on
this site). Even the nurses said icing hardly works but we’ll see how it goes.
Like most, not looking forward to a managing a different set of SE just when I figured
out how to manage the last set.

Barb – my blood is taken from my port as well. I get a slight
metallic taste in my mouth when the nurses flush the port but sucking on a Tic
Tac helps with that. It is so much easier than having to find a vein each time.
I would definitely go that route if you can. I don’t use the numbing cream
ahead of time – the stick is over in 2 seconds and so far breathing deeply and
looking the other way has helped for me. Be careful in the snow!!

Terry – my joints have been achy lately – I’m attributing
that to the fact that with the low hemoglobin, my MO told me to stay off the treadmill.
I’ve been given the ok to go back on so hopefully that will help with the
stiffness. I do find that about a week after the Neulasta shot (won’t be missing
that when I start Taxol!) I get soreness in my hips but nothing major that
Extra Strength Tylenol can’t handle. Again, I think the treadmill will help
with that too.

Alla/Nuffblume/Terry – you all have convinced me about the
bone broth. Now to find organic bones – going to have to go to my local butcher
and see what he can get me. There aren’t any Whole Foods near where I live so I
can’t raid them. I could try Weggmans but the closest one is about 20 minutes
away. I even have my husband excited about it – he’s been looking up recipes
ever since I mentioned it. Will let you know how it comes out. One question –
which method do you think is better – on the stove or in a slow cooker?

Connie – so sorry to hear about all you are going through. Hope
they find some answers soon and you can move forward.

Miles – thanks for the article. I saw the same one on a Facebook
post. It’s very moving and so very true.

That’s all for me for now. Love and hugs to all

Julianne

Hi Ladies,

I've been doing ok. My joint/bone pain has subsided the past day and I'm taking claritin daily. Of coarse I forgot to take it today and the B vitamin.

Julianne, I will check out glutamine. thanks for the tip. Do you take Glutamine supplements in pill form? Also I used the stove for my broth I have a crock pot but I didn't look like I could make a big batch in it. I was ok keeping it on a stove on a very low heat and keeping it that way over night.

Nfullblume, the only thing I felt so far on Taxol which surprised me was joint/ bone pain. I actually felt it more now then I did with AC. the neuropathy I have not experienced yet, maybe that comes later. from Julianne's tip I am also going to check out Glutamine and I'm already doing everything else the nurses advised. I'm still taking Cannabis oil daily not sure yet if it's helping with side effects because it seems I am doing ok so far. I have not had any bad nausea or had my taste buds change. Still not sure if that comes later after a few rounds of Taxol.

Connie I hope you'll feel better soon. so sorry your having a rough time.

I like how everyone is getting their blood taken from their port I am either getting it from my arm which I actually prefer but they also prick my finger and take it from there. I hate it when they use my finger. I had 2 nurses that refused to take blood from my vein in the arm and had to call upstairs to my Onco and they make a huge deal about it. I always look like the trouble maker. I finally got my Onco to write a note that I have a port and I can do it in the arm. I am going again this Friday and I hope the note works. I almost came out in tears when the nurses refuse to do what I ask them. I even show them my port but they don't care.

Tomorrow is my works Xmas party so I switched my chemo day for Friday and I am hoping it goes as well as last time because I have plans for a date night with my husband Saturday evening. I even bought a new outfit so I really hope I don't get sick the next day. I have been good the day after chemo so I'm hoping I will be good this time too. Now that Taxol is weekly it's really hard to make plans. we made plans for New Year to go away with friends even though I will be in my 5th treatment I guess it's a risk but we'll just have to see.

Hi Ladies,

How much glutamine do you take with Taxol

Hi Ladies

After introducing myself early on on this thread I backed off and haven't participated since. The whirlwhind of the first two weeks after diagnosis and immediately into chemo was just overwhelming. I appreciated the support these forums give, but reading too much on the internet just fed my anxieties and I needed to take a step back. So I just put my head down and forged on with the first round of chemo (AC). Recently I've begun reading this forum again and I'm grateful for the advice I've picked up here and I'm looking forward to connecting finally with you all.

I completed my dose dense AC treatments three weeks ago and luckily I tolerated the SE fairly well. I had a lot of fatigue but minimal nausea or mouth sores. I shaved my head but then only about 50% of my hair fell out so I look like a patchy GI Jane. I still have my eyelashes and brows although they are thinning quite a bit. I did have one week where I had to postpone treatment by 4 days due to a cold, but other than that I think I got by fairly easily compared to some.

My first Taxol treatment was this past Monday. I was very nervous about an allergic reaction because I tend to have allergies and have had asthma in the past. The pre-meds took care of that and with all the Benadryl I dozed through most of the infusion with no problem. I rode the steroid wave on Tuesday and felt great and overall I feel much better than when on the AC. By mid-day yesterday I was feeling the bone pain and it continued overnight and into this morning. I don't think it's bad enough to call my MO and ask for pain killers, but Tylenol only just takes the edge off of it. I did a lot of laying around yesterday which may or may not have made it worse. My plan is to do some light yoga and go for a short walk or two today to see if it helps. I really hope it lasts only a couple of days. I've had no neuropathy yet.

So far my tumor is responding well to the chemo and has shrunk significantly. Although the stats say that only about 30% of us achieve a PCR, I'm still hoping that I will as I'm triple negative so don't have many options later on if I relapse. My last chemo is scheduled for Jan 16, followed by surgery in February and rads in March.

Wishing you all continued strength through this ordeal!
Ellen

Ellen,

So happy to hear that you've made it through AC and that the tumour is smaller! I'm not doing dose-dense AC, so I feel like I'm going at a snail's pace compared to you dose-dense gals, but I guess we all wind up at the same place eventually. I love to hear that you kept most of your eyelashes and eyebrows ... I'm hoping for the same.

It's good to hear about your experiences with Taxol ... I'll have that after AC as well, and while we don't all have the same experiences, I appreciate knowing what others go through to prepare myself mentally for the various possibilities.

Best wishes to you.

Barb

Quiet day on the forum! A quiet day for me too, mostly.

However, I've noticed an increase in anxiety and nausea the last two days, which is perplexing to me. In the past, any nausea I had was in the days following chemo. But my last chemo was almost 3 weeks ago, and I was ok until yesterday and today. I'm feeling better with the help of anti-nausea meds, but don't want to start taking Ativan during the day for the anxiety. I'm wondering if this is from the accumulation of chemo-juice in my system. The anxiety is really annoying ... it makes me crabby and I feel like my skin is too tight!

Ah well ... maybe tomorrow will be better. My last AC is on Monday ... I'm so looking forward to getting it done.

Best wishes to all.

Barb

Hi everyone. It has been a while since I have written but I have been reading and following along. So glad to hear that some of you are finishing up and others are switching over. I am sure it feels like progress. I can't say that I feel any of that but still hanging in there. Since my lovely cocktail is every 21 days it seems like it is taking forever. Especially when the week after chemo I can't leave the house and lose almost 15 pounds every time but no worries I gain some of it back the following weeks. This just feels like it is taking a long time but I know it has to happen.

I also just have a quick question and need some opinions. My work is asking me to get on a plane and fly to Texas for 3 days. This will happen during one of my good weeks so that will be ok. I am just worried about getting sick or being on a plane with sick people. What do you all think? Also I have a port and a card they gave me to show if I need too but would that set off any tsa alarms or anything. I wouldn't think so but just asking?

Thanks for replies,

Melinda

Hi Melinda,

Good to hear from you. I also have treatment every 3 weeks, so I know what you mean about it "taking forever". But we will get there!

Regarding travel, I don't have any information to offer, but you might want to post your question as a new topic in the Chemotherapy section of this forum. That way people who have had more experience with chemo/ports/travel will see it and you may get responses from people who have been in your situation.

Best wishes,

Barb

Julianne, I bought my glutamine at Sprouts when they had supplements on sale. Shoot, where did I put it in this mess? =8-0

Lyn

I have been miserable the past several days.

I have hand and foot something and it has gotten worse over the past weeks. My hands and arms are inflamed, itchy, on fire, swollen. The two cortisone creams prescribed do nothing for it. I have also tried an oral steroid and Benadryl. I will talk to my NP or MO when I go for chemo on Wednesday but something's got to give. Maybe a lower Taxol dose for my last four infusions. Not wanting to do that but I'm pretty much a mess right now.

hi all -

deemendoza - I started taxol + carbo on Friday. My cocktail was benadryl, steroids, zantac (or the like), ondensatron, and for the carbo a 3 day Emend. I did not react to the taxol as some people do.I did ice my hands and feet which was tolerable. I take 3 dexamethasone on day 2 and 3 after treatment. So, today I am still feeling decent being on the emend and steroids. I will see what tomorrow is like.

Anyone hear from Connie1230?

Luwusu - I like Barb's advice - if you can get in touch tomorrow go for it.

K

Lyn - Good to know that Vaseline can be useful for hand-and-foot syndrome. Sorry to hear about the eyelid infection ... do you have antibiotic drops for it? Crazy how many ways our treatment schedules can be derailed!

KLNiss - It's great that you didn't have a reaction to the Taxol ... hope the side effects continue to pass you by. Regarding Connie, she last posted on Dec 7, and she hasn't visited since Dec 8. I sent her a PM but haven't heard back ... really hoping she's out of the hospital by now!

deemendoza, I'm right with you. I'll be starting 4 rounds of Taxol in a week, then will face bilateral mastectomy with temporary reconstruction, then 6 weeks of radiation, then permanent reconstruction, then removal of ovaries and fallopian tubes, then hormonal therapy (10-15 years, they say.) Even though I'm halfway done with chemo it still feels like so much is still to come and I'm already cranky and pissed off and finding it difficult to keep on the sunny side. Plus, winter in Boston, bah humbug.

I won't get Neulasta after Taxol. I wish I could figure out how the doctors determine what's in the protocol and what isn't--does anybody know? I hear that neuropathy is the big side effect concern with Taxol and otherwise it's much easier than the AC regimen that many of us are just finishing up. I have a bad reaction to the steroids (Martian invasion of the brain and body) so I'm also nervous about how much of them I'll need. The steroids really make me feel like I'm going nuts.

So yes, hating cancer and that we are all facing this. It's very hard to remember that this is something that millions of women have endured and come out the other side, and that of all the cancers to get, I guess I still feel lucky that I got this kind. I'm not, today, completely convinced that I'll ever have my full energy back, or my usual positive glass-half-full spirit. Cranky, cranky, cranky.

And on that cheery note, love to all.

Kate

okay, I'm doing better. Barb, I called my MO yesterday afternoon. Since she's not at my facility on Monday or Tuesday, either day was going to be an imposition (yeah, I know I'm a paying patient but.....). She told me to take two steroid pills right then, two this morning and two tonight and then we would reassess. If that didn't help she would think of something else. So l immediately took two and within a couple of hours my distress went from an "8" to a "6". I was really concerned that I wouldn't be able to sleep but I did sleep from midnight to 5am, so not terrible. I woke up with much less swelling and somewhat less redness and itchiness. I'm between a 4-5 right now. That's manageable, but I'm not happy about having to be on steroids all the time. And I know it's going to affect my sleep big time.

So many of you are starting Taxol soon or now. The side effects have not been awful, except for the hand and foot syndrome. I am going for #9 on Wednesday. Bothersome but not incapacitating SE for me have been: lots of bloody mucus and clots (gross- sorry- but stock up on the tissues), small sores over my arms, chest, other areas, the big D (controlled with Imodium), mood swings, mild tiredness (but I have any easy life- don't work outside the home and have a very helpful husband), hair loss of course (but my face has nevertheless felt this smooth!), very mild neuropathy (which I was most afraid about).

However, I am scared about the AC that I will be starting at the end of Jan. I've heard it is much harder than Taxol, Perjeta, Herceptin. Yes, I know everyone's different. I am not trying to be a Negative Nancie but the unknown freaks me out. I have gotten quite down some days on my current treatments and to know here's a good possibility that it will be a lot harder on the AC is frightening.

I try to keep a good attitude, but all of you who have recently voiced that this really sucks are entirely correct. And to know everything that's coming in the future and how long it will take to be done with this is weighing me down a bit. Everyday, the one thing that helps is that I try to think of all the good things in my life, which amount to people mostly.

So today, I'm thankful that we have four inches of new pretty clean snow outside. I'm thankful that one of my sweet friends is bringing dinner to us tonight. I'm thankful that my bad handsaren't making me act ugly today. I'm thankful that I had a long phone conversation with a fun friend whom I've known for thirty years and know knows me well. Any one else want to share?

Nancie