August 2011 chemo, anyone w/ me?!

vtellen

I guess the BRCA test will determine the future of my ovaries. And I have zero family history of breast cancer, but because of my age (49 at diagnosis) I met the criteria for testing. A package of paperwork will arrive in the mail, then I will met w/ the genetic counselor. I will see my onco again in a month, then every 3 months after that. But, I am on the aggressive tract, being grade3, my risk is higher. Onco said mammos, chest xrays. Which surprised me. I asked about CT and Pet scans and he said he would only do those for very high risk people? Ugh. My feeling is, and I hate to even put it into words, but he seems focused on my lungs. If it's going somewhere, I think that is where he thinks it will be. But, hopefully I'm just reading too much into everything. I do that a lot. Oh, I see breast surgeon after RADs, but why? Just to see healing and to see how much damage the radiation caused?

Chrys23

Hmm....thanks Robyn -- I think my Breast Surgeon said every year for mammograms..I need to check on that. I thought it was 6 months too. I had an MRI and ultrasound right before my first lumpectomy back in early June, so 6 months from then would be December, but I won't see him until May....that's so wrong .  My original diagnostic ultrasound and mammo were in May when I was diagnosed.

As for hair -- I'm still bald -- I see no growth right now in my future! LOL  It's onlly been about 17 days since my last Chemo.

Robo: Yeah, I'm still confused too -- I may see my old gynelocial-oncologist to just get an ultrasound ordered of my ovaries. I want to make sure they don't need to be removed. I can't imagine another surgery either.. Blech

MaryjRN

Congrats to Chrys and Ellen on your chemo graduations!

I'm on day #2 of my 3rd Taxol  I'm scheduled to finish on Dec. 12.

My dd27 gets married in 3 days, so there is still so much to do!  

Have great days!!

michelleo13

Istreet, hope all went well for you today with your first Taxol.



MaryjRN, a wedding! How exciting! It's nice to have something normal to focus on, isn't it? I know my new great-niece has been a welcome distraction from all this crap!

sandy115

Congratulation's Ellen and Robyn I hope you keep checking back with us still doing Chemo Its all uphill from here I heard rads are a walk in the park compared to Chemo..Chris and Robyn I too had a hysteractomy overies left in.Now I have a 3.5 cm cyst on left ovary the oncol said it would take 6 months for an M R I to chenk on it my family Dr sent me for an ultrasound because of pain thats how they found it but noone seems interested in the cyst since im on chemo.I did get appointment with a gyno but thats not untill feb 12th which I still have to have surgery to take out the remainder of my lymh nodes.Everyone just seems to pass the buck and Im worried about the cyst as I had cervical canncer thats why I had  the hysteractomy.I too am on Taxatore I hav'nt heard about the bad batch but I did have really severe S/E I am day 15 post taxatore and still in bed.Has anyone heard about the bad Batch here in Canada I go to see the oncol for blood work on Thursday but he is very cold no bedside manner and can't wait to get me out of his office Sorry for venting can't wait to get all this behind me.

Chava

Istreet- I am in here with you until the end (of December anyway!)I have my second of twelve taxols tomorrow. I am still fatigued from the first round but other than that no other SE. It is much shorter time in the chair than AC. and I don't know about you but I don't have to go the next day for neulasta either...Hope you have are SE free.

sandy115

Does anyone know if they have to wait 4 weeks after chemo to do Rads.I finish my chemo Nov 7

and herad something about Rads 4 weeks after that.My husband wants to take me to the Dominican for a celebration being done with Chemo its also our anniversary but I dont know if we can travel so soon after Chemo we would go away about 10 days after last Chemo. Has anyone done this.Please let me know.Thanks

michelleo13

Sandy, my radiation oncologist told me to make an appointment with him for two weeks after my last chemo. I imagine it would take a week or two after that to get everything set up so I'm thinking it will be 4 weeks. You might want to check with your radiation onc on the timing.

summergirl1

Sandy115, just wanted to pre warn you if you are flying and have had a Lymph noid clearance check into a getting a sleeve before  flying, a good friend of mine who had BC and had her lymp noids removed and did very well for 3 yrs after surgery then she took a flight to Paris and developed Lymphedema from the flight something to do with the pressure in the cabin., just thought I would warn you and others as she had no idea the flight could cause this and noone told her to wear a sleeve , I will definently get one before I ever fly after hearing that 

Vivie

ack! I plan to go on a trip Feb/March after BC shit dies down...Uuuuuugh.Guess I'll have to get one NOW that I have the money , rather than later - financial crash is expected in Greece..thanks for the heads up Summer! 

 So far , I don't have any bad S/E's that are lingering , other than the insomnia and the bad dreams and nausea..Killing time with Kindle sure helps.Next week I'm having the final AC infusion , then I move to the T.Can't wait - halfway there!!

I feel so down today..it's cold , we don't have the heat on yet bc of strikes / no money thing ( building commitee decides when to turn on heating ) we don't have a lot of money till we get paid ( my dad is a cotton farmer , so money's tight till we sell it.) and on top of that we have to contend with BC shit.Ugh.I'm in survival mode right now , I either have my nose in a book or the kindle or on the laptop.

TSB1

It's amazing how different our doctors do things. On my first visit to my BS he did the BRCA test and told me we would wait for the results before scheduling the surgery. During this time I went to the Hem/Onc doc and had tons of tests done that my plastic surgeon ordered. I already knew I was having a mastectomy and not lumpectomy and I also knew I would be having immediate reconstruction with a DIEP flap. The BRCA results came back in a couple of weeks and were negative. However, I decided to have BMx since my BS felt my chance of BC in opposite side was about 25% and since the DIEP flap is a one time deal. I am so glad I made the decision to do this as it was absolutely the right decision for me. Since I had BMx I no longer have to have mammograms but I will be checked by my BS every 6 months for several years. The reason for this is that all the breast tissue was scooped out and also they got clear margins. The BS explained that if it were to come back in the breast area, it would be in the skin and would be palpable on exam. He also said it most likely would be in the upper, outer quadrant because that's most often where it returns.

TSB1

I forgot something. My Hem/Onc doc also checked hormone levels on my first visit and determined I will be on arimidex.

oaktownmom

Chava - Sorry that you have to deal with this through December, but I'm glad we can do it together!  Just back from my first taxol - feel so much better than I ever did on AC day.  Of course I know that the SEs are more likely to kick in in a few days, but it's nice to feel decent right now.  It's a beautiful afternoon in Northern California!

Congrats Ellen and Robyn on being done!!!

Hope everyone else is having a good SE-free day.

Binney4

Summergirl and Vivie, if you're thinking of getting compression garments to reduce your lymphedema risk while traveling, it's important to make sure the fit is good, because a poorly fitting garment can cause constriction and be worse than no garment at all:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

And it's also important to wear hand protection, a glove or gauntlet (fingerless glove) so that any swelling doesn't get trapped in your hand:
http://lymphedivas.com/lymphedema/gauntletandsleeve/

There are other every-day risk reduction steps you can take as well:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Most of us get little help with this kind of information from our medical team, so it's one area where self-education is especially important!

Be well,
Binney

DebinUtah

Sandy--I hope you get to go to the Dominican before rads; that sounds amazing!  White sands, tropical breezes. Certainly sounds warmer that your oncologist!  Why do these doctors go into the business of treating seriously ill people unless they have some compassion (or basic social skills)!  It makes me furious. Did you have any choice about oncologists?  My insurance let me "shop around," so I spoke with three different oncs before choosing one. If my doctor didn't treat me like an equal and the nurses in the clinic didn't treat me like a princess, I think I'd truly be suicidal!  It makes me angry that any cancer patient's quality of care could be affected by where you live or your doctor's personality!  Sorry to sound off; I'd better go listen to my relaxation tapes and wish for Day 8 to come soon.

allformy4

Sandy115 --not sure if you had masectomy/reconstruction, but my PS sd 4 weeks after chemo to do exchange, and 4 weeks after that radiation.  If I wasn't having  exchange 1st, still 4 weeks after chemo b/c they want you to recover a little bit and get your immune system up some.

I had a very gung-ho BS @1st, who sent me for every test up front.  I had the BRACA and it was neg, which to me doesn't make sense b/c I have a very strong history of BC on my mothers side.  I was told that the BRACA gene is the most common, but there could be other genes which contributed to my diagnosis.  Go figure --is there ever a straight or consise answer?

sandy115

Debbieinutah I did not have a choice on oncoligist its different here in Canada its whoever is on your breast surgeons team.I wish I could have had a choice ut only 2 treatments of chemo left.Allformy4 I had a lumpactomy with sentanal node one node had a 2 m positive node now the surgeon wants to take out the rest of the nodes after chemo and Rads.I wonder if I still need a sleeve to travel even if it was just sentanl node they took out does anyone know.Thanks

Vivie

Hello Binney ,

 The problem is that I haven't ever seen a LE specialist in Greece  , ever , or anyone wearing a sleeve.Just a LOT of swollen arm/hands.I'm still learning , and sounds like I'll have to travel abroad for that.

Flautalee

Chrys--I feel that considering everything that you have been through, that you need to be checked on more frequently that what you describe. Maybe the dates were made based on someone not having all the allergic reactions and difficulty that you experienced during chemo. Each of us needs to be treated individually and with consideration. You certainly deserve to feel that you are being seen "enough.". I hope your SE's go away soon. I think you are still experiencing the "leftover" SE's from the drugs you were given. I am very glad that your oncologist stopped your treatments because your body was reacting to everything it seems. Best wishes and feel better soon! Lee

Flautalee

Aliformy4--I also am BRACC Neg even though I have a strong family history. As soon as the genetic counselors at my hospital can set it up, I'm going to be banking a vial of my blood for 20 years for $100 so that it can be used in testing as new genetic research comes out. My oncologist has told me that there are certain to be other genes out there that just haven't been identified. Take care, Lee

Binney4

Vivie, I know the feeling -- here in the U.S. there are too few well-trained lymphedema therapists, and our doctors know little about it so have trouble finding us good help. Many women here go without the care they need, and in fact without even the basic information they need to reduce their risk.

Here are a few trained therapists in Greece. If you're not near any of them you might want to call them and ask about therapists nearer to you.

Athens
Nikoletta Athanasopoulou, PT, CLT
Regional Anticancer-Oncologic Hospital of Athens - Saint Savas, Physical Therapy,  Tel: 210-645-1170

Evangelos Dimakakos, MD
Aretakio Hospital, Medical School of Univ of Athens, Vascular Dept of the 2nd Surgical Clinic,  Tel: 0302107286127

Heraklion, Crete
George Vardakis, PT, CLT
Private Practice, N/A,  Tel: 00302810286575

Imittos
Kallopi Kotzamani, Ph. Physiotherapist, CLT
Clinic of Physiotherapy, N/A,  Tel: 210-9736248

Nikea-Pireaus
Kyriaki Krousaniotaki, PT, CLT
Private Practice, N/A,  Tel: 6974722262

Preveza
Glykeria Liondou, RN, CLT
Kentro Fysikis Afarmakou Agwghs "Bio Ygeia", Lymphedema Clinic,  Tel: 003-026-82027063

There's also a lymphedema research center at the Athens University Medical School, with Drs. Cataliotti, Sakorafas, and Vlastos listed as researchers. They would be able to steer you to local resources for education and/or treatment.

Good luck finding the support you need!
Binney

vtellen

Sandy- I had a 2.2mm lump in my sentinel node, and we are not going back in for more nodes. The plan is to hit the node area w/ the radiation. There has been new research supporting not going back in for more nodes, as there doesn't appear to be any benefit in survival/ recurrence rates. I think that you can find articles on this site about it. Also, the risk of lymphadema is greatly increased. Why does your team what to go back in? I have been somewhat worries about this, but I really trust my onco, and he strongly believes that it is very unlikely there are any more positive nodes.

dianamaps

Ellen and others - so many congrats on finishing this part of the journey!  

I had my first Taxotere and Herceptin on Monday. It took an extra long time for the infusion (6+ hours compared to 3 for the A/C) since I had a strong nausea reaction during the Herceptin and they stopped it for a while.  But I really think it was just because it was already 12;30pm and I needed to have some lunch and the meds smell so bad...    

 So far, so good with only mild s/e.  Strongest most annoying one is an extreme light-sensitivity, so I'm wearing sunglasses a lot.  Good thing it just got cloudy today outside.  Otherwise, this is definitely better than the A/C so far!   The final A/C weeks were brutal.  Totally emotional and weepy.  Started Lexapro for anti-depression and will be meeting with therapist soon.

So many of you are finishing and going on to rads now!  I have this Taxotere/Herceptin until December, then Herceptin alone until Oct 2012.  And SURGERY in the winter/spring.  So far, no discussoin of radiation for me.  I'm BRCA positive and still have to deal with unclear margins from first June 2011 surgery. 

michelleo13

Istreet, I had the same experience. I had a ton of energy on the evening of my first Taxol....must have been the steroids. All-in-all, the SE of Taxol haven't been too bad. On Saturday (Day5), I had cement legs and could barely move, but otherwise it has been much better than A/C.



My sentinel nodes were also cancerous. They tested them during the surgery and the surgeon removed 6 additional nodes while she was in there. They were all clear so it appears the sentinel nodes did their job and the cancer didn't spread any further. This seems to back up what Ellen is saying. It seems odd for them to go back in afterwards and do more surgery to remove additional nodes.

TSB1

I had all of my axillary nodes removed because I was not a candidate for radiation since I have lupus. Many centers will not allow lupus patients to have rads since there have been cases of necrosis in these patients.



Theresa

Grimbol

Hi everyone, I am off to tx no 4 today, 7 hours in the chair!!  for some reason I am very apprehensive about this one, maybe I just don't want to do this again?!?!  All those cumulative SE's are freaking me out.  However, I will go and I'll touch base with you all later.

Have a good day everyone.

MaryjRN

Binny...Thanks for helping all of us Aug. 2011 gals on the ins and out of lymphedema.  We need all the info we can get!

Grimbol...Hope all goes well for you today!

A big hello to everyone else.  I'm enjoying the Midwest's beautiful weather.  We've been having an 'Indian Summer'  I'm on day 3 of Taxol.  More aches/pains today, especially in my already arthritic neck.

Have a good day ladies!

Chrys23

Morning everyone --

Ellen is correct: There are specific studies that say there is no benefit to go in and do Axillary Node Dissection. The study can be found here:  http://www.breastcancer.org/treatment/surgery/new_research/20100608b.jsp I

I had 1 out of 6 nodes and pray there isn't anymore cancer, but that is what radiation will help cover.

Flautalee: I'm with you -- I just asked the RO this morning and he said my mammograms would only be once per year....Are you f*ng kidding me?!  I'll ask for every 6 months and if they won't approve it, my employer does free Mammos every October (this is how I was diagnosed as part of my yearly exam).  So, I see the BS in May and I'll go in October as part of my employer program, which puts me at 5months or so. I thought EVERYONE was monitored every 6 months... I'm ticked at this, but I think I can get around it if it truly is the case.  I'm feeling a little better; however I'm still having residual s/e's. My throat spasms still when I eat and the A/C really messed up my stomach and hiatal hernia. I feel a bit of burning on the left side of my tummy and I burp constantly. I NEVER had issues with the burping/gas before the A/C and not on the Taxotere either. My stomach didn't hurt this way before A/C. That A/C is some nasty sh*t. 

I saw the RO in Philly today; my mapping is next Monday. It then takes a week or two to set up the "dry run" and then once I have the date for that, I start radiation the next day. I will also have permanent tatoos, but they will be really tiny.  The RO will radiate the breast (30 treatments) and I will have 5 boosts where the tumor site was. I will also have the lymph area and the clavical area too.

missey29

Hi - Just when I think my SE's have not been that bad then all of a sudden I can't taste food the same and my bottom lip is peeling. NIce! Goes great with my bald head and bloated face. Thanks BC.

Will have go back to read all of ya'll comments about what to do. The only thing I can taste are salty foods, peppermints and gum.  Even water is disgusting. How am I suppossed to stay hydrated for my weekly stabbing. Great.

Thanks for reading

Missey 

Grimbol

Missey, try ice cold water, Smart water isn't too bad either.  I used to drink water straight from the tap but I cant' do that now.  People on ere suggested ice cold and ice chips that does help.

I had tx no 4 today and my taste has really gone today, hope it comes back soon.