Starting Chemo, November 2013 Group

JAB- sending good thoughts your way. 

Thanks for all the birthday wishes.

Happy birthday Phebes

Hey Everyone! I've read through your posts & taken notes, so here goes: Smrlvr- I botught a semi-attractive bracelet too. I like the idea of the rebounder (I'm still 1-1/2 weeks away from my appt. A 5 week wait, unbelievable!)

Bluegrass & Quirky- Yay for you! Done is a wonderful thing! Bluegrass, how strong to drive yourself.

Lisa- yes to Mac 'n cheese. It was my taxotere taste buds go-to food.

Audra- yes, mood swings are a totally normal part of menopause. It's like being a teenager again LOL. If you're truly in the pause, the mood swings will pass, in time. Maybe gives you sympathy for your daughter? I just had my first unmedicated night: many awakenings due to sweats, but only enough to throw off/put on covers. Not too bad.

Wallymama- you rock your bald head!

Bec- I've finished 9/25 rads. Not bad at all, so far. The techs say many people take Ativan, and I sure did the first few times. Just say yes to drugs! I too used to have incredible brows, I got rid of my unibrow thanks to electrolysis. Now I wish I had more of that excess hair. I've got light brows still, but I've heard that 7 weeks PFC a lot of women lose them. We shall see... Nail polish: shoot! I've been using Opi: I read online that Orly has no formaldehyde. Guess it's time to go shopping!

Phebe- the solution to your "problem" sounds like a sketch from a comedy show! I too must use stool softeners and laxatives since I take pain pills.

Amazon - Yay for you, 2/3 is progress! The water does eventually go away. In the last 5 days I have dropped 8 pounds. I can now feel my shins, although they are still padded. I pee all the time, like every 30 minutes, but I'm happy to do it. The pain: mine is lessening, at least, but I've had a really rough time with it,and I'm not in the norm. Weirdest thing, this week my knee started shooting pains where I had surgery 7 years ago: it's like a flashback to my post-knee surgery pain. Taxotere is truly a marvelous experience. Norco & dilaudid are my friends.

Virginia- I waste my time with candy crush, but anything that gets us through is ok.

Jab- what a sh&$y deal with the scan. Did you have a bilateral MRI before surgery? That should have shown... You obviously live on a lake. It must be beautiful in the summer. Summer will come for all of us, and with it warmth and sun and laughter and happiness.

Ellen- since I had to be reopened and left to heal without closing, nobody can help but find my site. Oh well, it's fading. Did you get through the week ok? Thinking of you. Would have sent you a valentine if I had your address, you deserve one.

I'm so frustrated with my MO's office I could spit. I called two weeks ago to ask about getting my port out, had to leave a message. I called again and was told Dr hadn't noted that it could come out after week 3. I called on Monday & left a vm with "the person who arranges that." No response. So, I wrote an actual letter asking why I can't get a response or get my port out, stating that after all the pains of chemo, I don't deserve any additonal discomfort. Monday is a holiday, but we shall see if I get a call. If none by the end of Tuesday I shall begin to raise holy hell with everyone. Like calling the office every 30 minutes, writing the BS who referred me, etc. Unbelievable!

On a lighter note, I've got my ambitious sewing project. It makes me really happy. I haven't sewn much in a very long time, but I will again. I intend to do more things that bring me pleasure. I got into work, which is so good for my mind. My brain isn't there yet, but I write novels (unpublished), and will, in future, make more time for my writing. Perspective in life: perhaps that is one positive we can take away from all this.

Jab- I , like the others here, think it must not be a huge alarm as he sent you back to BS...hoping they find a solution and can get it fixed asap!  Keep the faith - there is a LOT these DR's can do...

Phebe- glad you are feeling better

Pat- How annoying that they won't call you back!  My MO place does that..I left msg yesterday am and Thursday and no call back yet...I guess when we are done with chemo not their number 1 priority.

Bluegrass and Quirky- how are you doing now that you're done?

I was given Tamoxifen but told I could wait 2 weeks to start it to continue 'healing'...

I'm seeing 2 gynecologists one for pap smear other is MO/gyn and getting their opinions on Tamoxifen or ovarian ablation or hysterectomy...I don't love idea of being on a medicine for 10 years to life with all of those side effects...

One of my friends in her 40s had a total hysterectomy years ago and said the best thing she's ever done and she feels great. no hot flashes nothing...

I will see what they say and then start the Tamoxifen if no new great ideas...

Did I say on here that saw MO last Friday for 1 month check...and he said to recheck my liver scans in October since I asked about the spots on there....now I'm worried again as why would we need to recheck them if they are nothing?  The other scans are for 2 years from diagnosis he says...I almost have the courage to get the scan now and be done with it..but not sure if I can take it if it were bad...cringing just going to the Dr at all nowdays...

Pat...found it under a thread about abbreviations...yup...PFC is post final chemo...yikes.  So glad I have that to look forward to.

(((audra)))...have wanted to post this for WEEKS now 'cause I know you are like me, very frightened about breast cancer recurrence & distant metastasis. 

Most people who are in their 40's-50's develop all sorts of stuff on their livers.  Just so you know, I have about 8 benign spots on my liver that appear to be fatty tumors or haemangiomas, hepatic adenomas, or focal nodular hyperplasia.  I have one mass that is approximately 9.0 cm in circumference...it is huge!  I also have a bunch of smaller masses all throughout my liver.  Nearly fainted when my MO showed me the scan images (CT Scan, I think)...I've had so many tests, I cannot recall.

The 9.0 cm mass takes over what appears to be 1/3 of my liver...I mean the thing is huge and I DO have pain from it at times, I think...pain and discomfort in my right upper abdominal quadrant.

I spoke with my MO about having the largest mass removed and he said "no way...not unless it starts to bother you and/or it causes problems in your liver or other organs-due to its size, etc."  He went on to say "most surgeons will not remove a benign mass because any surgery on the liver is highly risky."  This is true. 

There's a lot in the literature about adenomas of the liver and how they predispose one to liver cancer but frankly, primary liver cancer is EXTREMELY rare.  Hepatocellular Carcinoma, the most common form of liver cancer is primarily found in people who develop cirrhosis of the liver due to alcoholism, drug use or Hepatitis B and Hepatitis C.

Cholangiocarcinoma or bile duct cancer (or gallbladder cancer) can also begin in the bile ducts located in the liver...but again, it is pretty rare.

And for us women here, our biggest worry is (likely) breast cancer metastasis to the liver and/or metastasis to other distant organs (lungs, liver, bones, brain).  For the most part, metastatic breast cancer to the liver is treatable because the primary site of cancer (and type of tumors) are from the breast and NOT from the liver.  A totally different beast.

As a Nurse Practitioner, I refrain from putting out any medical/nursing information or advice on these boards because I do not wish to alarm or upset anyone.  But I am trying to put your mind at ease 'cause I know you are struggling mightily with the liver issues.

Hope I helped you a bit!

And I almost forgot...you ARE beautiful and your wig looks wonderful on you!  The cut is flattering and no...from your photos it does NOT look like a wig but very natural and gorgeous hair!

You are a beautiful woman and everything is going to be alright.  Let's help each other embrace the present and (try to) minimize our worries about the future.  I know exactly how you feel, Audra...I really do.

Many many hugs to you!

hey gals...just trying to catch up on everyones posts......going for round 2 of taxol on Tuesday, I am already having some numbness and tingling in my hands and feet..uggh hopefully it doesn't get any worse.  Interesting on the latisse, I should try and get some I believe its prescription only here.  my brows and lashes are still hanging on but have thinned quite a bit, be nice if theyd stick around.

Kimie06- Ask your MO as mine said no to using it  during chemo...just when I was done...

(((audra)))...I had an abdominal ultrasound and (I think) an abdominal MRI before my breast cancer diagnosis because I had bariatric surgery in Tijuana Mexico and I developed some pain in my right upper abdominal quadrant.  My Primary Care Physician wanted to rule out either 1) gallbladder problems (common after bariatric surgery), or 2) a leak at the bariatric surgery suture line.  My PCP originally ordered the test AND my medical oncologist re-ordered a total body CT scan (minus brain) after surgery 'cause he wanted baseline data for future reference (I was node positive).

I am NOT a radiologist-smile-but I will tell you what I know.  Haemangiomas, hepatic adenomas, focal nodular hyperplasia, lipomas and many other types of non-malignant "masses," which one can develop throughout the body have very unique and distinct characteristics that easily differentiate them from cancerous tumors or metastatic tumors (and vice versa).  Again...I am NOT a radiologist, nor am I a pathologist or an expert on tumor masses...my Masters of Nursing is in Psychiatric & Neurological Nursing, so I know a wee-bit about brain tumors, but... 

Non cancerous masses or "benign" tumors are generally, 1) very well-formed, 2) well-differentiated, 3) definable by an outer sheath or cover, 4) non-dense and (sometimes) translucent or blood-filled...vascular, 5) non-attached and "moveable," IF they can be felt (palpated), 5) non-invasive, 6) slow-growing.

Likewise, as many of us on breastcancer.org know, cancerous tumors have their own unique characteristics and traits, which identify them as malignant and are usually 1) highly irregular in shape & form, 2) not well-defined, 3) dense, 4) attached or stuck to adjacent tissue (non-moveable or fixed), 4) invasive, 5) in some cases, fast growing and quickly dividing.

Also remember that scans are not miracle machines and can only pick up, well...can only detect what they can detect.  My scans and ultrasounds did NOT find the metastasis in my Sentinel Lymph Node; so I was originally told I was Stage 1, Grade 1, Lymph Node Negative IDC.  It wasn't until my Sentinel Node (and the big node just below my Sentinel Node) went to pathology that the 5mm malignancy was found in the Sentinel Node.

Hope this has helped you, Audra.  I know how worried you are.  It sounds to me like you are in very good, kind and capable hands with your treatment team.  Having no nodes involved with breast cancer (or any type of cancer) makes a huge difference regarding the possibility of recurrence, Audra.  Feel Blessed that the cancer was found BEFORE it had time to invade your lymph nodes.  That is a wonderful thing!

One of my wonderful cousins in Rhode Island was diagnosed with Testicular Cancer when he was 28 years old.  I recently saw him at an uncle's funeral services and we spoke about his ordeal some 24 years ago.  He told me he was TERRIFIED when as a young man, he was diagnosed with testicular cancer.  Cancer treatment has changed a LOT in a quarter century. 

He declined to have DOZENS of pelvic, abdominal, etc lymph nodes removed when he was given the risks, etc.  He opted to have just a few removed (something that was not done at that time) and fortunately, the nodes were negative.  Here he is now, a man in his 50's and totally healthy!

Sending you a big hug!

Headed out for chemo today. I can tell it's chemo day because I feel good, haha. Today is my 2nd of two cytoxan/taxotere combos, and after that I just get two more taxoteres, and I'm done. Whew. There is an end in sight, after all. Hopefully this go-round I won't get sick and be miserable through most of the three weeks before the next one. Fingers crossed.

Wally, sounds like you had a nice meal!  I am glad you had a nice day.

Lisa, thinking of you today in thenBGC.  You are nearing the end, just keep,thinking that.

Jab, thinking of you this week also.  

Audra, it sounds like you are feeling good.  I am happy for you.

To all the ladies here, I hope you are feeling well this week and that you are warm with no snow!

I woke up,today with some swelling and a bit of pain on the inside of my left elbow.  I am concerned there are lymph nodes there that weren't removed during surgery.  Is that ridiculous?  Because I had pain in my left armpit before being DX that radiated down my arm to my hand, which is why I was not surprised I had a tumor in my lymph node there.  Bad memories coming back to haunt me.  So I am wearing my sleeve, I don't know if that will help. The good news is that I was in  a really deep sleep last night.  I did take an Ativan, but I haven't slept,like that since last summer.  I don't know if I was super relaxed or if I am just so wiped out from chemo.  I forgot what  it felt like to sleep like that.  Weird dreams, though. 

Pam from the October chemotherapy thread started a spring rads thread for all of us heading to rads.  

Sittin in the BGC for the first  taxotere.   

Thanks Audra & smrlvr   Treatment today was fairly uneventful. Biggest complaint is my own fault: Hubby went out to fetch us some lunch and for some weird reason I wanted hot dogs. And fries. And a chocolate shake. Regretting them all now. Well, not the fries. Definitely regretting the hot dogs and shake though lol. It's a weird thing; I only ever want hot dogs like once a year. WHY during chemo? lol.  Oh well. Just some annoying indigestion but it made the hour long ride home not so fun, and very HOT!  Funny how with all the anti-nausea stuff they give me and prescribe for me, sometimes plain old Tums helps me more than anything else. I wish they could add a bag of liquid Tums to my infusion cocktail.  :P

Also, Audra, it really does my  heart good to hear/read you being so upbeat and sounding happy! It truly does. YOU feeling better makes ME feel better, so keep feeling better okay?  BIG BIG hugs!!

wallymama, my hubby was super sweet today too, fetching lunch, and then later he went to the pharmacy for me to get my just-in-case hydrocodone prescription filled and came back with an adorable new lavender toboggan for me. I love that man! 

My office visit today was with my nurse practitioner -- she's kind of awesome -- and she was saying that they still don't really know for sure what caused my high fevers and chills, but we agreed that since Amoxicillin seemed to fix it, whatever it was, all's well that's ends well. Later though, my oncologist actually came out and visited with us in the infusion room and he said that there was a very slight chance that it was a reaction to the taxotere... which I guess means the whole thing could happen again. UGH.  If that turns out to be the case, he said we'd have to "renegotiate" my last two treatments. Yikes. The nurse practitioner seems to be leaning toward UTI, and I'm leaning with her, because even though I technically didn't have UTI symptoms, I always have been prone to them, and have run high fevers with them in the past. I guess we'll see. 

In any case, renegotiation or not, only two more treatments to go! Woohoo!

Jab and Paulette: Thinking of you two!!

Tonilee: What in the world did they say to you in this evaluation that sent you into a tailspin?!

Oh (((lisa)))...Bless your heart for caring.  I don't know, Lisa.  I've been refraining from posting a lot 'cause people here have such LARGER issues than me!

Long-story-short...my Medical Oncologist was off today, so this Physician's Assistant saw me, which is fine.  She ran 45 minutes or so late, which is fine.  She seemed very harried and quite frazzled, which is alright.  She plopped down in her chair, glanced at my records on her lap-top computer and said, "So,  you're receiving your 5th cycle of T&C tomorrow, your blood work looks good...blah, blah...any questions?"

I felt I was as important to her as having an STD!

I know I can drone on 'n on sometimes and I CAN be as boring as watching paint dry on a wall, but I felt very unimportant, very insignificant.  She almost seemed annoyed.

Primarily, we started a discussion about internal (seed) radiation (Brachytherapy), which was on my agenda and one of my BIG questions [versus EBRT (External Beam Radiation Therapy)] and the discussion headed SOUTH in a hurry.  What REALLY turned me off was she knew next to nothing about Brachytherapy...and she didn't want to know...did NOT want to have the discussion.

Now I understand this Cancer Center is NOT an advocate of Brachytherapy but c'mon...you're a freakin' Oncological Physican's Assistant for cryin' out loud!!!  Are you kidding me???

So, I say to this person, "Let me ask you this, please...if I may...what does a woman do who lives in, oh...say Alaska or North Dakota or Northern Minnesota and they have a 400 mile round trip to the nearest Radiation Center...how do they manage EBRT, 5 x per week x 7-8 weeks for their breast cancer?" 

She says, "They rent a hotel and stay near the center for the 35 days." 

I say, "Really...what if they do not have the financial resources or the money to do so?" 

She says. "They have to get it?" 

I say, "Oh...really..."...(wanted to say rob a bank or something?).

I LEFT THIS IMPORTANT PIECE OUT EARLER:  I say, "You know, many studies consistently show that approximately 30%-35% of women unsuccessfully complete EBRT due to the inconvenience...it contributes to poor short-term outcomes and the overall mortality rates." 

She says, "Are you a nurse or something?"

I say, "Yes, I am a Nurse Practitioner...but not in oncology." 

She says, "In what?" 

I say, "Psychiatric and Neurological Nursing, Rutgers University, Class of 1983." 

She says, "Where are you practicing?"

I say, "I'm not because I'm being treated for cancer."

She says nothing..

Finally, she says to me, "Well...if you continue to be so negative about your treatment & your future, you are making cancer win...your FIRST shot at this is your BEST shot...your best shot to get this right, right????...why would you want SAVI Brachytherapy?" 

I say, "Oh well...CANCER ONE, TONI LEE FIORE ZERO."

There was other stuff...like a wound I have on my left thumb from an injury Thursday night that she didn't even want to look at or touch.

The whole thing stunk.  I know I am depressed and I am trying to get help but frankly, I think the whole thing is comical.

I'm not even honest half the time with these folks about how I feel 'cause I don't want any changes...nothing that can mess up how I'm doing on chemo.

AND I HATE PLATITUDES...CANCER WINS...what does she know?  She doesn't even know me or my case?

My research nurse, Cesar and I chuckled about what a crank everyone in that practice is.  I hope he tells all of them how I feel.

Just having a very bad day.

But thanks for caring, Lisa.  Hope this gave you a bit of comic relief!!!

Lisa137=

You are just darling!  And I second the opinion about the PA Tonilee, she obviously was incompetent, and what kind of a care giver of any education tells a patient, then cancer wins!  OMG!! She NEEDS told on!!! and fast!

Jab- how are you???

Paulette- where are you???

Tonilee- hoping chemo goes smoothly tomorrow...when I first saw a BS here in Plano, she did the seed radiation, I thought it sounded great!  I think it would be worth trying to get done...she had a lot of info on her website about it as well.  I ended up not using her since I had surgeries in Colorado with my family PS and his BS there...

Happy night to all!