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So many questions, so much fear

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Suzanne B View Drop Down
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    Posted: Oct 31 2010 at 8:06pm
I had a 1.5 cm. triple negative, high grade tumor removed last week.  Margins were clean, as were the two lymph nodes.  I'm 64, and otherwise healthy.  Will start chemotherapy next week, and wonder what I should expect.  Do you have a chemo port implanted?  How long does it take before your hair goes?  Should I just get my head shaved after the first treatment?  I feel like I don't want to be a passive receptacle for chemicals.  I want to push against this thing.  Mostly I'm afraid that I won't be as courageous and strong as I need to be.
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snugltz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2010 at 8:41pm
Everyone seems to have different experiences with chemo.  Mine were not good, but I survived.  I had 1cm, two lymph nodes clean also.  My hair started to fall out about two weeks after first treatment.  But I still have some left.  It was long but I cut shorter.  My daughter is a surgical nurse and wears cute caps.  She gave me some and if I wear one the hair hangs a bit below it so it looks like I still have hair.  I know that is silly but it helps me a bit.  I have a port and as others on here have said it can be somewhat uncomfortable but it does help to be able to have chemo and blood drawn from there especially if you have bad veins as I do.  And I have not been at all courageous and strong but the kind helpful women on here have given me much encouragement and hope. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote The Texas Woman Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 8:00am
Suzanne,

I was 64 years old last year when I was diagnosed and treated for Stage 2, 2 lymph nodes involved. I think our age works to our advantage. We've already been through several trials and troubles, are more financially set, and have a support system of friends and family in place. That said, cancer and chemo still take a toll on our bodies and minds. I had a port installed, an easy process and a blessing, even when it's irritating. I took a rolling suitcase full of entertainment to chemo every time - my laptop (most places have wi-fi), magazines, a book, etc. Snacks if I wasn't having chemo during mealtime (MDAnderson serves sandwiches, salads and drinks at lunch and dinner). Also throw in a blanket if your place doesn't have those heated flannel covers. I love those. All that stuff and I usually slept through chemo!

Be sure to use the mouthwash they recommend and eat well when you can. Someone recommended McDonald's to me because of the strong ketchup they use and it worked for me. Also be aware of how you feel during your cycle. You'll be amazed that the same pattern is formed between cycles and you'll have good days as well as "mattress" days. Just go with the flow, girlfriend. Treatment ends. The sun comes up. All will be as God wants it to be. You'll find the inner strength and courage you need. But on days you waver, reach out...we're here for you.

Cher
Dx: 7/09 TN IDC Stage llB, T2, N1, Grade 3 and associated DCIS, BRCA Neg, Taxol x 12, FAC x 4, left mastectomy March 2010
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 8:04am
Suzanne,
 
My tumor and lymph node status were similar.  I, too, was afraid of being weak and afraid before starting chemo.  As snugltz said, everyone responds differently, but for me, my fears were far worse than reality.  The hardest part was losing my hair, but after it happened and I let myself grieve about it, I kind of learned to deal with it and kept telling myself that it would grow back (and it did!).  I did not have a port, but I also had only 4 rounds of chemo and pretty good veins.  Drinking lots of water the day of chemo and for 3-4 days after helped and exercising most days, even if for just a short walk, helped as well. 
 
While I hate that you have to be here, I am glad that you found us - there are so many kind and encouraging people here and we will help you in any way we can.  If you are interested, there is a Spiritual Support forum here with a daily devotional and lots of wonderful women who will pray for you.  At the bottom of this page, you can go to Forum Jump and select Support Groups and there you will find Spiritual Support.
 
Please let us know how you are and if you have any more questions.
 
Laura
 
 
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Suzanne B View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne B Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 8:20am
Thank you all so much!  One of the hardest things to deal with is that a month ago I was just like everyone else, enjoying life...then suddenly I became different.  Instead of being one of the crowd of friends and spouses who play golf and have dinner together, I became "the one who has cancer."  In reality, it's probably in my own mind that I'm different, because my husband and our friends have all been wonderful, supportive and generous.  There's surely a lot to be learned from this journey.  I feel so lucky to have found this network of generous, caring veterans.
Suzanne
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 9:15am
Hi Suzanne and welcome - my hair starting falling out 10 days after first treatment then I shaved it off. I had a PICC line instead of a Port - it worked very well for 4/6 treatments then became blocked.  As others said, the chemo experience can be different for everyone even when you are on the same protocols but some side effects are common. Do you know what type of chemo you will be having? I found my fears and anxiety were very high prior to chemo then I felt a bit better once things got going - like you said feeling less passive.  Genetic testing is something that is often discussed on this site too - something you may want to consider for your own benefit and potentially for any family members.

Keep us posted on how you are doing.

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 6:59pm
Here is a link that may help,
 
 
You are doing the right thing by researching and asking questions.  Try posting your questions in the "Talk" section where more may see your posts.
 
http://www.breastcancer.org  is a good place to read and also http://www.lbbc.org is another.
 
Most of us get some sort of picc or port to help with the infusions.  Otherwise it can be painful with the needle sticks.
When you have your Onc consult to discuss what they propose to do don't hesitate to ask questions.  Take someone with you, an extra set of ears is helpful.
Also I found asking the nurser's questions worked really well.  You can always call them when you have concerns.
What kind of chemo will you be having, do you know yet?  Many start losing their hair around 14 days, some prepare ahead of time by buying a wig or headwear.  When the hair starts to come up some go ahead and shave it off while others may not loose all of their hair.
 
We are all different but as you read around the forum you will learn from other's experiences.
Best wishes,
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MMGabriel Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2010 at 11:12pm
I got the port for chemo. I had the same fears and questions. My hair started coming out about 2 - 3 days after the second AC treatment. I remember thinking, how will I know when it starts to happen? When it was more than just a few strands you realize, this is it. To be honest, it was just a relief to have start. Eventually, I shaved it off. I know some people loose eyebrows and eyelashes. Mine are quite sparse, but still there. I think you should see what you feel comfortable with. One thing I read was that if you do go and shave it off at a salon, make your appt one of the last ones so you have some privacy.

The outward sign of illness really troubled me. Now, I find that wearing a cap instead of a wig troubles others, but not me. I tend to wear the wig to make others feel ok.   16 weeks ago, I would not have thought I could have made it to this point (2 weeks out from chemo), but I did it. You can too.

There are many people with much knowledge here, like Pam. :) It has really helped me be strong.
5/10 Dx IDC TNBC, age at diagnosis 39, Stage 2, Grade 3, 2.7cm, 0/3 Nodes; ACx4/Tx4 dose dense; 6 Weeks Radiation
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2010 at 8:40am
Hang in there4 MMGabriel - it seems that I was where you are not that long ago and now have just finished chemo.  And now you are actively fighthing this thing!! Like you I am comfortable with caps and scarves - never did the wig thing (except 30 years ago with a different cancer). .

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2010 at 6:03pm
Congratulations to both of you for completing your chemo treatments!
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bondande Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2010 at 7:48am
I know what you mean Suzanne about now feeling like the friend with cancer.  I hate that.  I celebrated one year out from treatment on Nov. 2 and that year went extremely fast.  I have new aches and pains, some I think are stragglers from chemo, others are just from getting older.  Hard to discern which ones are from what.  Try to have a positive attitude as much as possible( I was not always good at that ). I agree with Cher that all will be as God wants it to be.  He will give you the strength to endure it all. I also believe everyone should be born with a port, that chemo isn't as bad as having your face ripped off by a chimpanzee ( which was the vision I used for myself on bad days to straighten out my attitude because I saw on her interview how amazing her attitude was and it was inspiring), that I was very lucky to be 55 years old with cancer and not 3, that having cancer has made me see how strong I can be when I need to be, and that you don't sweat the small stuff as much anymore after this diagnosis.  The chemo tips on this forum are right on so check them out.  Lots of advice from experienced , loving people on there.  I lost my eyelashes 3 times which was hard  for me , my hair after 3rd treatment, wore wig sometimes caps other times, slept in a recliner a lot which helped with tummy issues, found that cottage cheese, peaches, applesauce, crackers and an enormous amount of water were my diet of choice during chemo, allowed myself to cry when I needed to, and if you come here with your fears and tears there is always someone to help you through the tough times. I never thought I could do it, either, but I got through it and you will, too.


  May God bless you.
   Bonnie
age55,Stg2a,Gr3,3.8cm tumor,mod.rad.mast.lft brst3/4/09,4ac,4taxol,33 rads.done11/2/09.BRCA1+oophorectomy1/5/2010,mast.rt brst 2/18/10,NED,bonescan 8/16/10,NED,catscan11/29/10NED catscan 3/17/11 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2010 at 7:55am
Suzanne B,

What type of chemo are you getting?  I had 4 treatments and didn't need a port.  However, after the 3rd treatment I had problems with the vein so the last treatment they had to use a different location.  My onc said there's some thought about using a port even for 4 treatments.  Some people have no problems without using a port.  It's been a year and it looks like the vein is almost back to normal size again so maybe they can heal themselves.

Good luck to you.  The anticipation is always the worst part.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2010 at 12:44pm
I do have bad veins so a port was rather a must.  But one reason they gave me was that if you just use a vein, not a port, if the needle someone pulls out or misses and the chemo gets into your body straight that way it can be a problem.  I guess somehow the body handles it in the vein, but not injected directly into the body.  Does that make sense? 
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MMGabriel Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2010 at 12:48pm
I also have read that. If there is direct contact of the chemo (e.g. Adriamycin in particular), this can damage the skin.
5/10 Dx IDC TNBC, age at diagnosis 39, Stage 2, Grade 3, 2.7cm, 0/3 Nodes; ACx4/Tx4 dose dense; 6 Weeks Radiation
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