Chemo June 2010

jvf - sorry for your news and that it is upsetting you. Can you gather up questions and make another appt with your surgeon, or discuss them with your oncologist? the only info I can add is that i think ER 80% is a good thing, because it will be affected positively by hormonal treatment, no? i have er 75%.

Also, maybe you can try to focus on the positives - they found this extra stuff and got it out already, instead of you finding it when it is bigger in 6 months time :-) From what I was told - all the tests we do (MRI, PET CT, etc) cannot find stuff that is smaller than .5cm, so in this case it's really good they found them during surgery for you.

sorry anout spelling - neuropathy is making typing diffivcult

Thank you Latte.  I will talk to my onco.  Surgeon is great but the wait just kills me.  I mostly just need to vent.  I have trouble finding people I can talk about this with.  Yes I just did a little research and ER pos is good.  I also noticed that there is a little debate on Tamox vs armidex because I am still not in menopause.  (Thought I was and guess what came back this week!  Complete with nasty cramps I though were due to Taxol) 

Also, I agree with you on the Thank God they found it part.  I would have to be in a looney bin if they had found more in 6 mos as you say.  I actually redid my "cancer math" and I still have an only 16 percent chance of reoccurence in the next 15 years.  I also know that I and ALL of us are much stronger than our cancer and we are not statistics we are strong vital women who can make it through this and anything else life hands us.  BUT  I am just freaked.  Thanks for taking the time to hold my hand.  I need a friend in the trenches!

Joan

Latte:  I had my 1st of 4 dose dense taxols last Friday and the shot on Sat., as of yesterday I was in quite a bit of pain with sore hands and feet.  They felt as if they had been burned and trying to use them was very painful.  Today that pain is not as bad, nor is the pain from my fingernails.  However, I continue to be in a lot of pain from bone/body aches.  I never experienced that pain from the shot when I had AC so I'm thinking it must be the Taxol.  I have been taking the anti inflamitory as suggested by the Onc but it does absolutely nothing to help.  Any other suggestions?   Latte, I hope that the pain in your hands and feet also go away in a day.  I made sure I kept them out of water and kept lotion on them.

i have another question - i've been getting headaches the last 3 weeks (after the last AC and first taxol txs - so it's not a se of a specific tx). they are always in the same place (over my left eye). they are sharp pulsating pains, they only last 1-2 secs, and pain medication doesn't help.

my oncologist said there is no way it is a brain met, because of the location, and she won't send me for a test to see (my brain was never scanned in the PET CT that i did for my dx, which i thought was strange but apparently is standard).

my gp thought it is sinuses - because I had a bad cold 2 weeks ago. the cold has gone but the headaches haven't.

anyone know how long sinus pain can last? anyone else had headaches like this?

JFV--I agree, you should talk to your onc.  I am sorry for your news too, and keeping you in my thoughts and prayers.  Hearing/reading the dx is always so hard, and takes awhile to process.  Like others have said, we are here for you!!

Latte, danielle, and others already starting Taxol--thanks for letting us know your se's.  I start 2 weeks from today.  I'm surprised you both already have hand and foot pain, as I thought that only started after a few txs!  You can always ask for a scrip for pain meds, I know others have needed them for pain caused by Taxol.  Sorry you 2 are suffering!!  Stupid chemo...

Latte, the headaches almost sound like migraines.  Do lights or movement (like bending over) make it worse?  Or maybe a problem with your eyes?  I would go back to the gp and make her do more tests.

thanks tina. I guess i just straight away think of the worst, but you're right, there are other things to check forst. I actually used to get migraines, but this feels different to the visual disturbances and headaches I used to get with the migraines. On the other hand, I have been thinking of going to the eye specialist anyway because I have been having focusing issues sometimes since I started chemo, so maybe this is connected...

i will deal with this tomorrow :-)

Hi Ladies-  Thanks for your thoughts and suggestions.  I am glad I have you to freak out with. 

Taxol ladies-I too got immediate pain in fingers and toes after my first Taxol and had muscle and joint pain day  2,3,4,  Aleve helped some as did exercise and warm bath.  fingers and toes feel odd still but not bad today.

Obviously, denial is a big part of my cancer life.  I have been ignoring alot of info or forgetting it.  I don't know if it is irresponsible of self preservation.  I am gonna be happy about er at 80% Julia2 my

PR is25% and that was called strong.   80% was very strong.  so I'm thinking your ER at 20% is still strong.

Latte-  Migrain and sinus are my two best votes.  With me if the sinus infection is small  I can almost feel where it is in my head. Anything green coming out when you blow your nose.  ( I know yuck) Migraines can be very weird and if there ever was a time for Migraines this would be it.  I guess I am not really in menopause.  Just a temporary chemo pause ( I am 49)  I have 3 older sisters who hit it at 52. Wow I hope these hot flashes don't last for three years!

Julia- congrats on the rads!  That does sound like the light at the end of the tunnel.

TMarinna-  Thanks for the kindness and prayers.  It is time to ask questions.  How are you doing with the empty nest?

Thanks for letting me vent.  Oh I did find a group discussing multi focal BC on this site.  There are a few of us.  Turns out you are staged according to your worst diagnosis.  That does make sense.  So, in scientific eyes it doesn't really channge thing,  It has just given me an increased feeling of vulnerabiltiy.

I started my chemo on June 9th.  The day before I was to go for the 2nd round I developed a raging infection and chemo was put on hold.  To make a long story short I was on oral antibiotics for two weeks, home infusion for 3 weeks, had to have the expander removed and will be restarting on 8/16.  Of course I lost my hair and it is just beginning to grow back in time for the next round.  I was originally scheduled for 4 treatments but am wondering if they will have to restart due to the time in between the first and second treatment.

JFV - I had positive margins when I had my lumps removed in April.  They had to go in and remove more tissue and nodes, which all came back clear.  I would definitely have a talk with your onco or BS about the results. Do they want to do more surgery? Will they do radiation after the chemo.  Coming from someone who is triple negative, be glad you are ER+.  You have more options available to you.

Ok, I am really worried about the Taxol.  I already developed dark red/black marks under my thumb nails, near the cuticles and I haven't even started Taxol yet.  I hated having headaches after the anti-nausea meds.  I need to remember to call the onco's office tomorrow to see if they have those gel gloves.  If not, I need to bring some frozen packs with me for chemo to put on my hands and feet.

Hi Ladies thanks for all you kind words.  I just realized my Dx is incomplete under my name and I don't know how to add to it.  I have already had a bilateral mastectomy with implants.  At that time I knew there was a suspicious lump in my other breast.  But I did not know about my lymph nodes or that I had a variety of cancers growing.  Post surgery I was very miserable and did not process what people said to me.  So, the surgeon spoke to my husband.  My husband is a glass half full sort of guy and told me all was well and I believed him. 

On my first visit to the onc she obviously had my report because she told me I was stage three with positive lymph nodes.  I have no memory of being told I had "deep" margins or was growing a regular cancer farm.  I was simply told about the ILC.  Turns out you are staged according to your worst cancer. I now know that deep margins and the lymph nodes are both reasons I get radiation. 

I already know I am getting the full buffet of cancer treatment.  Already bilateral mastectomy and dose dense 4th generation chemo, radiation for six weeks and then Tamoxifen or another drug depending on my menopause status.  I am convinced that I am being hit as hard and as heavy as I can.

It is just that reading the path report made me feel very vulnerable all over again.  Thanks to all of you for letting me vent and giving such thoughtful replies.  Family and friends either do not want to hear the scary stuff or I don't want to tell them because it will frighten them too much.

janny-  I think I read on other threads that it is not uncommon to gain weight due to steroids, but it really is mostly water weight.  I think I read that several ladies lost weight (significant amount like 10 pounds) the week after they got off steroids.  I wouldn't worry about the weight, just do your best to eat nutritionally sound foods.  You have enough on your plate to deal with.  It reminds me of a sweet, elderly man I was interviewing for an article years ago.  He offered me doughnuts and I declined, saying "I'm trying to watch my weight".  He admonished me saying "you better eat things while you can, someday you won't be able to!"  It did put it in perspective, also made me laugh.

All you nail-challenged ladies.  I have read that the following things help.  Icing (or gel gloves)during infusion.  Clear nail polish.  Tea tree oil rubbed into nails (this from a chemo nurse who swore by it).  I would definitley ask your chemo nurses, they know SO much.  Also, why not call the Taxol Pharmaceutical company???  As they provide these gel gloves, maybe they will supply them to you?  After all, this is a nasty SE from THEIR drug, shouldn't they know how to combat it????

elbede-  So sorry aout your challenges.  Let's hope you have smooth sailing from here on.

JFV- I also had a time figuring out how to add additional info about diagnosis.  Go to your "home".  Then click "edit profile".  Scroll all the way to the bottom to where it says "signature".  You can add additional info there that will be visible when you post.

DesignerMom, You make a good point, but my understanding is that the studies show that the cosmetic results are very good after ten years with the Canadian rads protocol.  Admittedly I plan to be around a lot longer than 10 years, but to be honest i don't have a lot invested in how my breasts look, they've never been my best feature and if I end up with a mastectomy before this BC journey is done I wouldn't have reconstruction.  My biggest fear re: rads is limitation of arm movement or ability to run, since I compete in a sport which requires lots of short burst sprinting, fast direction changes and arm signals.  It's probably most like tennis from the standpoint of the type of movement.

Julia 

Taxol is tomorrow.  I bought some tree tea oil to put on my nails tomorrow.  And I'm bringing some small ice packs.  We will see how this works.  Wish me luck!!! 

kitty-  We're thinking about you.  May you breeze through Taxol!  About the tea tree oil.  You may want to use it more than just on the day of treatment.  I don't think it can hurt to use it every day.  It has lots of anti-fungal and healing properties, I actually use it in my "greener" cleaning concoctions and it even removes mold from tiles!  As it is oil, and messy, perhaps take a little pot of  cream (even cuticle cream) and add the tea tree oil into it?  That way you can have it on the bedside table and rub it into cuticles more easily and more often?  Hang in there.  You are on the home stretch now!

reneerodgers-Welcome!  Wow, you are almost finished!  These ladies are wonderful, full of information, support and FUN! 

I've been thinking about all the ladies we haven't heard from for a while.  No need to talk if you don't want to.  Just want you to know you are in our thoughts and prayers. (dsa-deb, holliecolorado, cheyenna and everyone else) .