TRIPLE POSITIVE GROUP

Anonymous

Well I made it through my first round of chemo ! Today I feel more like ME! Still have a little fatigue ...diarrhea ... and now my hair is falling out by the handfuls .... sat on the side of the bath tube yesterday holding some of my hair and cried... when I stopped crying I thought ... losing my hair is much like a snake shedding its skin.. I'm shedding the old to become something new... I know that sounds weird... but it works to get me through this process... I just hope it grows back.. I'm on Taxotere .. blahhh...

I'm glad I'm feeling good for the 4th .... Then its round 2 next Friday.. I am going to insist that they do the H and P slow.. if not I will throw a hissy fit..

My tumor does feel different maybe not smaller but flabby feeling if that makes sense ? Its under 2 cm and sometimes can be hard to find...
Maybe its just wishful thinking ..

Went and talked to the one of the folks at the Gild's House on Weds. Drove for the first time in two weeks... that was fun.. NOT ... lol Nashville is not a fun place to drive... but I made there and back..
I urge everyone to find a Gild's House in your area ... they are WONDERFUL... and have classes,workshops .. support groups and such to help you with your cancer journey... and its all free.. plus your family and friends can come too
In mid July I'm starting ... Qigong,Tai Chi and Mindfulness / Meditation classe! I'm excited

I hope everyone has great 4th of July weekend !
Hugs from TN..
Denise

kae_md99

hi all,

can you tell me what kind of tests/ bloodworks/scans your MO did after treatment to check for recurrence? if he/she did tumor markers,what are those? and how often were these tests/ bloodwork/scans done? my MO said she will only do physical exam on me and i was surprised that she wont do more...

BJI

DeniseT

Well said, thank you.

Anonymous

Hey..
HapB , I'm Taxotere which if I'm not mistaken is medication like Taxol .. I think its made from the same plant alkaloids ... Special K or someone correct me if I'm wrong..
But I had my first loading dose over 2 weeks ago... and my hair is falling out by the handfuls ... its a good thing I've got a lot of it ... if my hair was thinner I would already be bald!
I'm just going to either get mine shaved down or even just shaved off this week...
Also my eyelashes are falling out but only on my right eye !?! lol... too weird...

Hugs from TN
Denise

shelabela

hapb,

I lost my hair on Taxol, some do some only shed. Mine was coming out so fast I couldn't keep it cleaned up so I shaved after the 4th dose. My head also hurt so bad. Felt so much better after I shaved it.

SpecialK

denise - yes Taxol and Taxotere are both taxanes (as is Abraxane also, but without the solvents) but Taxotere is a more powerful drug - it is Taxol's big ugly cousin.

Anonymous

Great.. I get the ugly cousin.. wheeeeeeee lol

Hugs from TN
Denise

Anonymous

I took my hair down from the pony tail while we were out and about... the rubber band looked like it had a hedgehog wrapped around it...

And yeah...my scalp is very sore...

kae_md99

HapB,

i had my first herceptin only infusion last friday and i have bone pain in lower spine.plus joint pains. but i just finished my chemo so i dont know if these are cumulative effects of chemo ,too. plus i am taking lupron so there is that to consider also...

kmac68

Hi Ladies,

I haven't posted on here in quite a while however, I read this forum daily. I had chemo #3 of 6 Wednesday. I definitely suffer the side effects (mouth sores, nausea, big D, body & muscle aches, taste changes, headaches, fatigue...) My MO decreased my Taxotere dose on Wed. because of some of the side effects. One of my biggest complaints is all of the muscle pain I am having, mostly in my legs. I can't hardly do anything without pain, even changing positions causes pain.  My labs have been okay but are definitely on a down hill trend. When I go back a week after chemo to have my labs checked, I usually end up getting a Liter/bag of IV fluids due to dehydration. I find it hard to drink as much water or any other liquid when everything taste so different and nausea. Another thing I was wondering if anyone has experienced. I have reflux but it gets so bad after the chemo and for at least a week I feel like I have something stuck in my throat, it goes away before my next chemo then comes back again. I have found that my 1st 10 days after chemo are the hardest and I start feeling better the last 10 days just in time to get chemo again. Sorry for the long post.

Anonymous

Kma.. I'm sorry your having a time of it .. Im also on Taxotere ..

they increased my Omeprazole to two a day..that helped with the heartburn... If it wasn't for my husband reminding me to drink I wouldn't drink 1/2 of what I should... My MO's RN said I should be drinking 1/2 my weight in oz to stay hydrated. Its hard to get it all in..
I felt bad , really bad on day 3,4 and 5 .. then I started feeling better on day 6 and on ward ...each day a little more ...

Hang in there.. you've only got a little more to do then your done...

Hugs from TN
Denise

BellasMomToo

kmac: My MO recommended Prilosec OTC and Pepcid AC for the acid reflux. I took Prilosec everyday (until two weeks after my last chemo) and Pepcid AC as needed. I couldn't drink carbonated beverages cause it hurt too much.

kae_md99

kmac,my reflux was so bad that i wanted to quit at cycle 3. my case is complicated by gastroparesis or delayed gastric emptying. i had omeprazole 40 mg twice a day,pepcid twice a day, sucralfate4 times a day, metoclopramide, maalox as needed,gi cocktail as needed ( lidocaine mixed with mylanta) when the pain is bad. i literally had everything under the sun for my reflux. my MO reduced my taxotere to 80% at cycle 4 and it became bearable. also had an endoscopy prior to cycle 4. maybe sucralfate will benefit you?ask for the liquid one hang in there,you are almost done.

twiggyOR

DeniseT, I also had taxotere. My hair started shedding lightly on day 12 and got worse each day. When I shampooed on day 16 so much hair came out I had to buzz the rest of it. It was the hardest day of the whole process and the day I cried the most. 😢 My head hurt for about a week while the rest of my hair fell out. I used a lint roller each night to massage my head and collect the stubble. It sucks to be bald but it doesn't last forever.

Anonymous

Thank you Twiggy ...
I'm a redhead.. or was one before I started going grey ....... I keep thinking " well I've been wanting to get it all cut off and start over for while,beware what you ask for"

Hugs from TN
Denise

Anonymous

From this morning when I brushed my hair out ....

Yeah..its going ...

Hugs from TN
Denise

SpecialK

Denise - you're right on schedule, not that it helps, but you are on the expected timeline. For some unknown reason, I didn't lose my hair until day 24, so I actually had two infusions before it started to fall out. My MO was amazed. At that point I buzzed it to about an inch. I had very long hair that I cut before chemo started and had a hairpiece made from what was cut off. I don't recommend shaving smooth with clippers dragging across the skin, it can cause irritation. Often if you buzz it down to an inch or less,the rest doesn't fall out - mine didn't, I was never shiny bald. I put the hair out in the backyard for the birds to use for nests since it was spring.

SpecialK

hap - no way to know, as this is pretty individualized with Taxol, since it is less intense taxane. Some people lose it all, others just thin - even through the whole course, however since it was the loading dose yours may shed more and then stop, or continue. Sorry for that vague answer. Have you noticed continual shedding each day, or has it slowed down?

SpecialK

hap - go ahead and wash or brush, if the hair is going to come out it will whatever you do. You don't want to stay in limbo holding on to unhealthy hair. If it is going to come out, the sooner it does, the sooner new healthier hair will grow.

Anonymous

Thanks Special K ...
Yeah ... it was interesting this morning when I brushed it out...it was coming out in handfuls....those pictures really don't do justice on how much hair came off my head this morning....
My husband took a look and said " it still looks pretty good,no bald spots...just looks straight and thin now"

Thank you for the advice about not shaving it down ....

Hugs from TN
Denise

deni1661

Suburbs - WOO, HOO.....I am cheering loudly!!! I am so very happy for you. Thank you God for answering our prayers. I have faith each of us will beat this darn cancer

deni1661

Hapb - I have terrible pain in my tailbone but my MO thinks it's from the Letrazole. I was originally on Arimidix and ad body aches all over including my tailbone. MO switched me to Letrazole about 2 months ago and the body aches are gone except for the tailbone. I had a pelvic and lumbar MRI last week and they didn't show anything...

kmac68

Denise, kae, bellasmom,  Thanks for the reply. I am taking omeprazole, think I am going to have start taking it twice daily and add Zantac as needed. I have a hiatal hernia that adds to the reflux, I'll call my GI Dr. if it gets worse.

Denise, My hair started falling out at the two week mark, I had already had it cut into a short. Four days later it came out by the handfuls in the shower, it was very traumatic to me...another reminder of what the cancer & chemo was doing to me. Right after that my hairdresser met me at her salon and buzzed cut it with clippers. I noticed more coming out after my 2nd chemo, it was very prickly and it hurt. Last week my husband shaved it smooth for me with a razor and it feels so much better now.

deni1661

Hapb I agree, there seem to be many unknowns with our treatment. I'm happy with my results but how can anyone know for sure which medicine(s) is causing which side effect. Plus at my last treatment they gave me Perjeta for 60 minutes (usually only 30 minutes) and I got sick which never happened before. I asked the nurse why the change and she said it was because I'm off trial i.e post surgery although this was my 3rd infusion since I had my last surgery. It's all so confu

deni1661

Hapb - I still get Herceptin. It is a coincidence that we both have the tailbone pain. I'm going to ask my MO what he thinks at my next treatment.

SpecialK

hap - you can also experience delayed onset bone pain from your loading dose of Taxol. It is not necessarily certain that it is the Herceptin, it may be coincidental timing. Bone pain is more commonly a SE of taxanes, and you can certainly have both delayed pain and delayed onset neuropathy. I also strongly believe that the infusion running time for Herceptin is a player in the pain as a side effect.

Anonymous

I'm over two weeks out from having my TCHP and every once in a while I will have pain in my right hip,but it just for a second and then it goes away. Had bone pain in my left ankle this morning . Liked to have brought tears to my eyes. just lasted for less than a minute. But now it's gone. I was thinking it was the Neulasta .

SpecialK

hap - If your WBC is too high it indicates possible infection - was that discussed?

denise - it is very difficult to suss out what is causing what pain during chemo because there are a number of potential sources. Usually the two bone pain culprits are taxane chemo and Neulasta. The possibility that ankle pain would be caused by Neulasta is unlikely however, because the pain Neulasta causes is from bone marrow producing white cells in abundance. It is usually the longest and largest bones, and the ones that have the largest marrow deposits - hip, pelvic girdle, back, shoulders - that hurt on Neulasta. Having Neulasta induced pain two weeks out is also fairly unlikely - but you might want to continue Claritin to see if that helps.

Anonymous

Thanks Special K !

You're a fountain of good info ...thanks for being here!

kae_md99

count me in on the tailbone pain as i am now in herceptin only infusion.. Ct scan of pelvis and abdomen and thorax prior to chemo showed bones are ok...