Starting Chemo in Nov 2016

Shadowcat07

do u have to be invited to facebook group? The above link isn't working for me

aterry

Leslie2016 if you only have a couple of chemos left (congratulations on that!) why will you have the port for another year? Do you get the Herceptin through the port? Sorry if that's an uninformed question. My surgeon said they'll take mine out when they do the breast surgery in March, I assume that's because I'm triple negative and won't be going onto Herceptin.

Hope88, I'm retired and feel lucky for that. I greatly admire those of you who have the energy and concentration to work and/or take care of young children. My tumor also shrank by a small amount (not as much as my MO had expected) and I was also told that the important thing was that it hadn't grown. My MO increased my Taxol rounds from 10 to 12, though, so that must have been due to the ultrasound results. I think my MO is leaning towards a mastectomy, too, though she's waiting to be further along with the Taxol to decide.

Leslie2016

You are correct aterry. The herceptin is given intravenously just like chemo, so I will have the port for a year while getting it. Wish I could lose it sooner.

Shadowcat, yeah for whatever reason it doesn't seem to be working. for plantchild I had to friend her then send her the link. Private message BG or me. We can sort it out.

BG46TN

shadowcat let me know if this link works for you....

https://www.facebook.com/groups/604831976364120/

I could be because the group is "secret" if it doesn't give me your facebook name and I'll try to find you and friend you so you can be added.

BG46TN

I had my first taxotere yesterday, so far so good....no side effects at this point. My neulasta went off today so I know I'll be achy from that tomorrow...

I've just been tired, laying around, took a nice nap this afternoon...I really hope this is easier then AC was!

Aterry I'm sorry you had to get a port after all! how many more infusions do you have left? Im still using my veins...I had an issue with the vein they used for my 1st 2 AC infusions, just last weekend it got all sore, swollen (and it hasnt' been used in 7 weeks!) but once I started the steroids for the taxotere premeds it all went away. My MO said the steroids are good for swelling too, so I hope it stays away now! LOL

Chemist

Shadowcat, I had a blood transfusion about 2 weeks ago--3 units--and it was a godsend. I have been feeling so much better ever since. (My hemoglobin was down to 7.) I just write because I want to reassure you about the prospect of having one and perhaps lessen your anxiety.

BG46TN

chemist that is good to know, my hemoglobin is down to a 10, if it gets much lower I will also get a transfusion...

Hope88

Well ladies, we just do what we have to do to get through this.

Aterry, my MO is thinking about adding hormone treatment to my Taxol to try and reduce the tumor more. This is not common practice so she is doing research. So of course I tried to do my own research and the limited information I found showed no FDA approval yet, just trials. Not sure of how I think of being on a trial. I do give Kudos to my MO for thinking out of the box. I am glad you don't have to worry about going to work, but in a way I like it because it keeps me busy and thinking of other things than this constant battle.

BG are you getting weekly Taxol or dose dense? Just wondering because I am on weekly and get no more Neulesta. When I did my labs, my white blood count was great so I guess they know what they are doing by not prescribing the Neulesta. I don't miss it! I hope your SE's continue to be minimal.

BG46TN

Hope88 I am doing dose dense taxotere every 3 weeks...Friday my wbc was a little high and they were worried about an infection somewhere (my vein from 7 weeks ago AC was swollen a few days ago) but then they said they think the wbc was high from the steroids.

Its my hemoglobin numbers (red blood cells) that are low, making me anemic, extremely fatigued...so they are watching that number.

Annie16

Hello all,

I did some catch-up reading to see how everyone is doing. It sure seems as though my 4 rounds of TC (Taxotere and Cytoxan) are an easier go than those of you on the AC+T routine. Rounds 3 and 4 made me very tired. I didn't bounce back as fully or as quickly (or, maybe it was that I had a college student home then and keeping us up to all hours) from Round 3. I am finished now - about 5 days out from my last treatment and scheduled to start with radiation (hypo-fractionated course so 16 treatments plus 4 boosts) on February 13th. This approach to radiation delivers the same total dose in fewer sessions (fractions) and has demonstrated comparable effectiveness out 15 years - and possibly reduced side effects. They will only use it is you are over 50 because they are waiting for more time/date more to confirm longer term effectiveness. I mention it just so you can have the conversation with your radiation oncologist if it might be appropriate for you. I am looking forward to recovering a little bit of my energy before losing it again with radiation.

One other thing to mention - I have also found a surprising lack of awareness about not using the arm impacted by surgery for blood pressure, shots, infusions etc. My oncology team is good about it, but the hospital staff seems to be unaware. I had to have a resection to clear up margins and I expressed some concerns about it and they put a red band on my arm so that folks would leave that arm alone during surgery when I wasn't conscious and able to defend it! It is something you all might ask for if you find yourself having any other surgery or hospital admit where many staff come and go and might not know the protocol.

I am sending you all what little extra energy I have as you keep moving through this and celebrating your progress!

BG46TN

Annie16 congratulations on being done with the chemo part!! that's awesome! Interesting about the radiation I have no idea yet how much I'll have to do yet, but I'm hoping for a shot amount since I have no lymphnodes involved...we'll see

plantchild

Hello Bellasmomtoo... I go tomorrow for blood work before Chemo on Tuesday. I am going to ask about the prilosec as a few have mentioned it! Looks like we are on the same chemos and schedule ( I started the first). I miss diet coke too!!! The gas pains are bad and gas-x doesn't help....I also have been having stomach pains after I eat, I think again it is from all the acid. A friend gave me a bottle of high pH water today to try and I was able to drink the entire thing without heart burn!

amw5

BG46TN - "Its my hemoglobin numbers (red blood cells) that are low, making me anemic, extremely fatigued...so they are watching that number". This is the same for me too. I've been working on my eating to help with my numbers. I was extremely fatigued, but now it's so much better. Thank God.

Annie16

I hear you all on the anemia. That's a whole different kind of fatigue. The kind where you sleep for 10 hours and wake up tired nonetheless. I guejss we all need to make alot of spinach smoothies!

BG46TN

Today is day 3 after Taxotere (had it friday) and I feel like I'm in a fog, I"m at work, but my head is not in it LOL I have a film in my mouth and nothing tastes good :-( I had none of that when on AC so I can I can't complain too much LOL

I was so tired all weekend, lots of laying around, napping...yesterday I felt jittery, dizzy feeling...thought I was going to pass out, but didn't...and just gas pains..

I can't wait to go home after work and nap LOL thankfully as a teacher I am home by 3pm....

I hope everyone had a nice weekend and have an uneventful week ahead!

DizzyGirl

I am from the Dec 2016 checmo group. I am on TCHP and I have 2 rounds down and 4 to go. I am interested in joining your Facebook page. We don't have one. I'm listed as KImmie G Dawn.

Thanks!

BellasMomToo

Plantchild: We are on the same schedule -- I started on 11/2. I get Chemo #5 tomorrow. Unfortunately, GasX doesn't eliminate all my gas, but it does make it less painful. Also, with GasX, I don't have explosive "D" (like I did w/o GasX). Today I picked up a box of GasX "Ultra" -- the Ultra is stronger than the Extra Strength version and should last longer between doses.

Hopefully Prilosec OTC will help you. I take it every AM, then take Pepcid AC in the PM.

I can't wait for these stomach issues to be over. I seem to alternate between constipation and diarrhea, with a few 'normal' times in between. I'm afraid to treat one in fear of causing the other so I only use treatments as a last resort. I take a stool softener on a regular basis just to make things easier. I never had these issues before chemo.

Sorry if this is TMI.

BG46TN

Dizzygirl I sent you a private message.

The facebook link for anyone else who wants it too is

https://www.facebook.com/groups/604831976364120/

BG46TN

I am on day 4 after taxotere....I guess I"m doing "ok" I feel really tired all the time, over the weekend I felt dizzy, "foggy", jittery (thinking from the steroids) gassy....yesterday and today I just feel like I'm in a fog in my head...some pain in my legs but advil is making that feel better.

Last night I went to bed before 8:30 and slept until 5:45am and woke up exhausted...ugh I guess this is what I have to get used to? Just being so tired ALL THE TIME? I'm still working (teaching) and I really don't want to miss a bunch of days knowing I will have surgery in the spring and will miss a bunch then, but man oh man if this gets worse as my treatments accumulate I may need a few "sleep" days LOL My RBC was low so I'm anemic now from this too so that doesn't help...

yesterday I went home from work early because my sons school called that he wasn't feeling well, which worked out good for me since I was very happy to leave and go nap! LOL

Anyone else on Taxotere feeling this way, and when did any neuropathy kick in (if you got it?) right now I don't have any (*fingers crossed) taking B6 and hoping to keep it away!

chickensandgoats

Hello again!

I had my first dense dose Taxol yesterday. Today I've noticed some tenderness in my fingernail beds. It was tender enough that I used scissors to open ketchup packets at lunch. I know that some people lose their nails while on Taxol, but would one dose cause side effects already? Am I just crazy? ha ha

I hate to complain because I have been doing great through chemo so far.

Thanks in advance.

aterry

Chickenandgoats, I had issues with my nails, fingers and toes after the 1st dose of Taxol and I'm not even getting the dense dose. I had some neuropathy with AC but it was different--pain in my finger tips and the bottom of my feet. Some call that hand-and-foot syndrome, not neuropathy. On Taxol the pain eased but I have numbness & tenderness in my fingers tips. I also use implements to open up pill bottles, etc. Button holes are difficult. My feet & ankles get swollen by the end of a day; and the tips of my toes are purplish; they are a little better in the morning. I try to elevate my feet during the day and to keep active with walks, etc. That helps a little. Also I'm taking L-glutamine. My nails are not black, yet. One is sort of grey. Like you I'm concerned that if I have these side effects so early in treatment (I have #4 tomorrow) what will it be like by infusion #10, 11, 12?

amw5

I did my second Taxol chemotherapy treatment today. I have two more to go. My blood work numbers came back good. I won't be needing a blood transfusion. I had given up red meat in 2011. So, with all of this happening, I've had to incorporate back into my diet, and it's helped me tremendously (thank God). Once I'm done with chemotherapy, I will work on removing red meat out of my way of life again. I'm just glad I feel so much better, and I don't have that crazy fatigue going on any longer. I only sleep 8 to 8.5 hours a night, and then I'm up. I still get a rest period in daily (which doesn't always include sleep), and I still exercise (old habits are hard to break).

I hope everyone is doing well.

(((hugs)))

Marie

BellasMomToo

My chemo drugs are Carbopatin and Taxotere. My fatigue days are days 3 - 11, with days 4 - 7 being the worst. (I spend most of days 4 - 7 in bed cause being upright is exhausting.) Although I start to feel better around day 12, I don't feel alert enough to drive until about day 14.

I haven't experienced any numbness (neuropathy) or problems with my nail beds. (Knocking on wood!!!). My nails seem stronger than before I started chemo.

My closeup vision gets blurry and starts to clear up about 15 days after chemo. I also get fevers, starting around day 5 and lasting 1 - 3 days.

I also get pain on my right side, near my appendix. I think it's caused by gas/constipation. Starts about day 3 and last for about a week.

Just had chemo #5 today -- only one more to go!

Hopfull2

hi BG46TN, I know exactly how u feel. I just had my 4th round of taxotere a 1 1/2 weeks ago and I felt horrible. I also felt in a fog. Jittery just not myself. It took me 5 days to feel normal. Hope you start feeling better soon.

Nanpop

aterry. I haven't spoken to you in a while. Did you have a choice of dose dense taxol? Did you try icing your hands and feet? Studies have shown it prevents neuropathy.

amw5

KB870 - I wouldn't have it any other way. I'm gluten free, and I love eating organic. It's been the best way of eating for me since 2011.

amw5

For those having issues with neuropathy, I started having issues with neuropathy after my first Taxol treatment (on January 10). I do dense doses (aka every two weeks). So, I started icing my fingers at home (with frozen veggies) (for 20 minutes for a few times each day). I'm no longer experiencing neuropathy. After my second Taxol treatment (on January 24), I'm still doing the same, and I'm still not experiencing any neuropathy. I wanted to try this several times to see how it actually worked for me before I posted it here. I say it's worth a try. I hope this helps someone else out. ps. I also take B6 (as recommended by my medical oncologist) (started it way before I started Taxol).

Marie

Hanging_in_there

I'm interested in the facebook group, but neither of the links I've seen work for me.

advice?

aterry

Hi Nanpop, thanks for reaching out. I haven't seen many posts from you of late? How are you? I wasn't given the choice of dense dose but I suspect that would be harder for me. The nurses suggested icing and I've been doing my fingers--I was a chicken about doing both hands and feet. But last night, when I got home, I iced both my fingers and feet (toes, really) and I'm doing that again today.

amw5, you do icing every day? I thought the helpfulness came from doing it while the chemo (Taxol, also) was circulating and I've been told that it circulates for 48 hours before your body excretes it. My icing last night helped a lot. I was amazed, really, at how much better my toes were. I'll certainly continue with it. The supplement I've been taking is L-glutamine. I have no way of assessing whether it's helping.

pmevans50

Hanging_in_There, if you give me your full name or e-mail address info in a PM, I'll find you and add you to the page. :-)