Starting Chemo, November 2013 Group

audra...I think so many women deal with similar issues of trust, caretaking, isolation, etc.  Please know I am here for you and that I care about you!  And private message me any time you feel like "unloading." 'cause I know how helpful that can be!

pam...I feel a kindred-ness with you 'cause we are so close in age and our diagnosis are very similar, as are our treatments.  We are also living in FREEZE ZONES-smile-practically neighbors!   Although I rationalized with my MO to do the "triple treatment," he refused to treat me with Adriamycin because with my family history of heart disease, he felt it might prove too toxic for me.  I wish I could come through the screen a give you a huge hug.  Like so many of us, you are feeling the emotional & physical effects of this treatment.  It's hard.

I mentioned last week that I called the On-Call Oncologist (last weekend) who was covering for my MO at the practice.  I was frightened and concerned about symptoms I was having.  At that point, I was less than 10-days out from my 2nd T&C treatment.  The on-call doc said to me "listen...do not minimize this...T&C is a tough treatment...it is Hell...some people do well, most have problems...it's hard."  She affirmed for me that I was not "being a baby."

AND ADRIAMYCIN IS THE WORST!  You are undergoing a tough treatment regime.

From what I "hear," I think Taxol will be easier for you...I KNOW it is easier to "manage" than Adriamycin.  My Cancer Coach, Mary did your regime and said "Adriamycin was the worst for her...Taxol was the easiest."  That was her experience.

And like you, I'll be moving on to 35-40 Radiation Sessions...under-arm, supra-clavicle, upper arm and breast-dose dense after chemo.  Radiation Oncologist wants to expand the "field" and really blast away 'cause I had a rather large tumor in my sentinel node.

Oh...and thank you, BigT...you are correct about the reason for some shortness-of-breath and breathing difficulties.  And someone earlier asked about chemo-brain.  While some of it may be attributable to stress, pre-occupation, depression, anxiety...I think a LOT of the confusion has to do with low oxygen flow to the brain due to blood counts...it makes sense.

I suffer terribly with confusion, inability to recall names and words, lack of concentration, TREMORS, inability to read, WRITE or even string sentences together in a coherent way for approximately 7-10 days post-chemo infusion.  Whatever the cause, it seems real to me  :0(

Hang in there, Pam.

Thanks Toni!

I feel the same way!  And we are basically neighbors, living in states next to each other.  I told my hubby I would love to meet everyone on here for a ladies get together, especially some place warm!   However if for some reason I couldn't make it I at least wanted to go to Michigan thought maybe we could meet for a day excursion or something!  

BigT16,

That makes sense as my doctor said I was anemic due to low red blood cell counts.  My hemoglobin was 8 and my WBC was1.6.  Both went up this week, WBC was 6.4 and Hemoglobin was ten.  Both higher than ever since I started treatment.  I do get the Neulasta shot after each Chemo to help my counts.

Does anyone know of a good way to boost red blood cells?  Doc told my DH to feed me steak and red meat.  Been trying to avoid red meat....also peanut butter, SpecialK cereal as it is iron fortified.  I used to a lot of salads with Kale however after my first chemo we went out to eat and after my salad I became very sick-just made it to the bathroom on restaurant.   Now I can't even think of a salad or anything green with turning green myself..?

amazon...my guess is Hungary...has Pat guessed that yet?  My maternal grandmother was Italian but born in Hungary.  Her family moved to Foggia (in the Puglia region of Italy) when she was a little girl.

I AM going away, ladies...promise!

Amazon- no I will not be doing rads, I did double mastectomy and had no lymph node involvement so no rads.

Northwinds. we've all done our pity parties. The good news is, you've done your last one, now you can look forward to getting back to a more normal you.

Ellen, even if the Vick's helping is all in your head, it helped. Our heads are at least half the battle, and if it thinks something is good, then it really is.

Audra, the nurses always use my port for the blood draw. They put a small amount of a blood thinner in the tube after it's used, either for the chemo itself or for a draw, so it doesn't clot. You should insist they use the port, unless the actual Doc doesn't approve for some reason. After all, that's why it's there, to make everything as easy as possible. Some of the nurses some of us are dealing with sounds like real jerks. The last one who drew blood for me, one I hadn't seen before, was so short and brisk. Almost like she was doing me a favor. I tried to believe that she was just overworked that day because they had had three nurses call in sick. But they really need to learn to not let those things show. We have enough issues without having to deal with rude nurses too.

The weather here is supposed to be really bad the next few days. Not as cold as Northwinds, but record breaking for us. The high Monday is only supposed to be 0. If that happens, it will be the lowest high temperature since 1918. And of course, I have my visit to the BGC on Monday. The daughter who is supposed to take me drives a Honda with more than 150,000 miles on it. I sure hope it starts. It would be pretty funny if I have to go get her so she can take me to the MO's office in my car.

As for mastectomy vs lumpectomy, if you have mastectomy and reconstruction, how do you keep them checked? I know that the chance of recurrence is smaller, if even only marginally, but seems to me that it would be harder to feel for lumps with fake boobs. I have ILC, which was not picked up by my mammograms. I still have absolutely no idea what kind of surgery to have. My very first thought was to take them both off NOW. Since the chemo has come before surgery, I've had a lot more time to think about it. Wondering if you can feel anything through the reconstruction, and some of the issues with the TE's, is making me rethink mastectomy. I'm not a candidate for using my own tissue because of all the abdominal surgeries I've had. Not that it's a decision that needs to be made next week or anything. I still have 5 treatments to go before it needs to be addressed. Still, it's a decision that wanders around my head on a daily basis.

Like Veronica, I had always figured that if I ever got breast cancer I'd have a double mastectomy immediately, and that's exactly what I did. In my case, it also turned out to be the best decision for my cancer; sneaky ILC in the left breast, and lots of potential for future development in the right.

It's an *extraordinarily* personal choice that's perfect for some and horrible for others, but in my case, my husband and I also opted for no reconstruction. 

Thus far, neither of us regret either decision at all.

Wallymama-

I was told I will get breast MRI's and have the implants under the muscle so yes you could feel a lump...but my tumor itself was 7mm. and I could barely feel it when they found it...so hoping I could feel something so small.  They cut out most if not all of your breast tissue so you can get tumors in the skin or small bits of breast tissue left by accident....but it is very small chance...

I also knew I would do the bilat. mastectomy...I had saline breast implants before this...as I was 98 pounds and no boobs left after my 3 babies and nursing....so with those I also think it helped as the breast tissue was on top of implant and right there to see on mammogram and to feel....anyhow the surgeries aren't that bad at all...cakewalk compared to chemo I'd say...

Northwinds, congratulations on being done.  Now you can get back to your normal activities.

I have been having the shortness of breath and rapid heartbeat.  It does go away, but it is scary.  Audra, thank you for the list of food that promote red blood cells.  I need them because I was anemic the last time they did blood work.  The problem mis that most of those foods are not appetizing to me right now and I am not a big red meat eater.

I finally feel better today.  Still too cold to go out and walk, but I can get some things done around the house and maybe get out of my pajamas!  I have been watching a lot of HGtV.

My nurses have been great and always use the port for blood draw.  A word about the port and clotting...a friend of mine did get a clot in hers.  Not from blood draw, but she was doing too much, carrying in groceries, laundry, etc.  it almost killed her.  They had to remove the port, put in a pic line and she was on bed rest for 6 weeks.  So just be careful.  That port is a foreign object in our bodies and it can move.  I can't wait to be rid of mine.

Lisa, I am with you in the ILC and BMX.  I do not regret it, but I am upset that my BS talked me out of the tissue expanders at the same time.  I think he used my vulnerability to get his way.  Now if I have reconstruction it is an extra surgery and I may not be able to have tissue expanders if the radiation causes damage.  That puts me into a more complicated surgery with longer recovery so now I don't know what I want to do.

Wallymama, good idea on a cancer free night.  I wish I could do that.  It is always there for me.  Can't seem to shake it.  I need to deal with that.

@Smrlvr: My surgeon was exactly the opposite. He started out assuming that I would want reconstruction and was surprised and taken aback when both myself and my husband said --pretty much at the same time -- that's not an issue for us. So then he made a big production out of explaining the process anyway, and told us like three different times that we could change our minds, even down the road, if we wanted. THEN after all that, when he set me up for my initial meeting with the "Team" (which I wound up using a different team anyway,) the plastic surgeon was initially part of the meeting and I had to say again "We're not going to do reconstruction at this time. Seriously. We're not." lol.... all I can figure is that my surgeon must be a boob man. My husband is a leg man. :P

Audra: When I was in the hospital for a week with my infection, one day a nurse showed up saying that she needed to draw my blood. She poked me in the vain for that. Before she left with the blood sample, I asked her if that was the whole blood work for the day. She said she only had a requisition for lactate. I asked if she could speak to the doctor and use the sample for the WHOLE blood work, because I wouldn't want to be poked the second time that same day. Then she left. A few hours later another nurse showed up asking for another blood sample! I asked if it is going to be taken through my picc line this time.  He said no. Then I said that I am NOT having anybody poking me TWICE for the same thing during one day. Sure enough after my resolute NO to their poking practices, they sent a special picc nurse to do the job. BTW I had my blood taken two more times that day, due to pre and post antibiotics levels, both times luckily through the picc.

I spoke to the doctor the next day and specifically asked to have my blood taken ONLY trough the picc. He agreed. After that they drew blood only through my picc. 

BTW: They always flush the picc with saline before and after use.

good early morning!  slept since my last post....zzz zzz.....going back to my cocoon again! was FREEZING HERE IN FLORIDA and just couldn't wake up for anything past two days. the cold didn't help.hope to read later. the anemia is kicking my butt. Huggs

Question:

I'm SERIOUSLY considering changing my MO.  I think I've commented how they always say 'You're so anxious, your are just anxious, you need to relax...,etc'  and the latest was when I went for blood draw and they went back n forth sending me to blood draw room then infusion then back then back both saying how I wasn't scheduled or supposed to be drawn at their spots...well I also stopped and talked to my Dr's nurse on way out as she hadn't called me back with what to do about not sleeping.  She said the DR said ,' I am on too many medicines already and he doesn't want me to take sleeping aid'  I am on Ativan for sleep and Prilosec...HOW IS THAT TOO MANY? 

2.  The spots on my liver he minimized and said don't worry, lots of people have them while the Dr I had seen before said get Mri to see more that CT showed....anyhow I think I was weary and scared and just went with it...while it plagues me a lot and I worry  about those spots...so I asked my MO to have another radiologist look at my cd of the ct of liver and see what their thoughts were...he said ok, and I have NEVER heard results...I have been wrapped up in chemo and feeling awful and forgot myself until recently when the worry came back...he never brought it up...??? Did he have someone look at it?? I will call tomorrow am and ask the nurse and see what she says...

Meanwhile slept under 6 hours again last night and wide awake...I am so tired..

Anyhow I have one last infusion and am going to call a different DR tomorrow to see about getting in this week...would it be AWFUL to switch in the midst of this? 

I have a friend who had breast cancer 7 years ago and she recommended her people at Baylor Cancer Center, in looking it up they have nutritionist, mental health counseling, etc...ALL things my guy does not offer or act like I need...he also does NOT specialize in breasts- so I am only young person when I go in waiting room, infusion room, etc...and only bald one...

What are your thoughts?

Hey, I have some questions and was wondering if someone would be able to answer them for me. I am writing a 5000 word essay on breast cancer and chemotherapy and wanted to compare chemo to other treatments. If you could choose would you rather have Herceptin as a treatment or chemotherapy. Also I would be extremely grateful if some of you could share your stories on your experiences with both chemo and targeted therapy.