Dis Breast Cancer Survivors Part II -GAGWTA!

[DeeCeeSW]

GAGWTA Ladies! Hope everyone is well.

I met with the nurse practitioner at my oncologist’s office today and we have made some changes to my treatment plan. Instead of having them say I'll have 4-6 infusions/treatments of TC, the decision was made to have a DEFINITE 4! Plus, the treatments will take place every THREE weeks, not every two weeks as originally planned (I get a bit of a break!). The nurse and doctor discussed the “dense dose” and felt that every 2 weeks was just too much. Apparently, they know of women who have developed pulmonary problems (!) from the 2-week regimen, so it’s OUT! I still start on June 3rd!

I will now finish chemo EARLIER than I first thought (barring no complications), finishing on August 5th. However, there was a glitch today—I had blood drawn at the doc’s office last week and for some reason my creatinine number was high (kidney related) and so was my liver enzyme. This is VERY puzzling as I have never had a problem before this and even the doc says that it would have been odd for MSKCC to have agreed to do the surgery at all if there was a problem. I don’t remember them taking blood from me the entire time I was hospitalized, however, I vaguely remember them taking some just before the surgery (same day). Is it possible that all they checked was my CBC and did not do panels?

Blood was drawn again today and hopefully this was a lab error. Doc and I cannot imagine how I could have developed a kidney problem “all of a sudden.” Just what I need! If the numbers come back high again, he will have to send me to a nephrologist first before administering any chemo. So this wonderful new schedule could be KAPUT and chemo could end up being delayed!!!

I also talked them out of the port. This may be a mistake, but I figured I may be able to make it through the 4 treatments w/o one. We actually compromised. The first dose will be injected into my hand and if it causes problems or ends up not being a logical option, I have agreed to have the port inserted for the next three. So far the doctor and nurses have been great. I was reminded by them that “they work for me,” and that they will do whatever is within reason, of course, to make this easier for me. I ask for your positive thoughts for the test to come back within normal range!!!!!! At least I’ll find out by tomorrow afternoon.

Dawn

 

[judithen]

GAGWTA, Ladies!

Hi Dawn, you've definitely been given some mixed news today.

The chemo regimen is encouraging. My docs considered a dense dose (every 2 weeks) as being a little too much for me, too. So we did every 3 weeks. Actually Northwestern here in Chicago was one of the pioneers in the 2 week regimen. I was glad they didn't apply that philosophy across the board but patient by patient.

I don't know anything about the blood work except that it does need to be re-checked. Since I've had cats with chronic renal failure, I've had experience with high creatinine levels. But I doubt that applies to you since CRF never happens "all of a sudden". Perhaps some IV fluids when you're getting your infusion would correct any imbalance? Also with cats, a high liver enzyme can be due to stress. I wonder if any of this can apply to humans?

As you may have read in my other posts, I had a port and it didn't take. Within a couple of days of implantation, I had to have it removed because I developed cellulitis. In fact, a number of my doctor's patients, who were getting chemo at the same time I was getting mine, also developed cellulitis and had to have theirs removed. Her group was very upset with the hospital about it. If Northwestern was a so-so hospital, it would have been a different story. But it's one of the federally designated Comprehensive Cancer Centers. The culprit may have been a new antiseptic used to clean a sterile field prior to surgery. The antiseptic was clear as opposed to the usual orange Betadyne. The thought was that a clear solution didn't give a visual as to what was sterile and what wasn't. Anyway I'm not a big fan of ports.

If you're only having 4 infusions, then I bet your veins will hold up okay. I had 8 infusions and only the last one or two started to get a little difficult. Personally I think your triage nurse makes all the difference in the world. A good nurse can find that vein when all hope seems lost. If one of your nurses seems better at finding your veins than another, then make sure you schedule your appointments for when she's on duty. And ask for her. The nurses and the techs all seemed to understand when I made requests for a certain person. I wasn't playing favorites. I was making everyone's life easier.

God bless. May everything go easily.

 

[jackskellingtonsgirl]

Dawn - I hope your bloodwork comes back normal this time! Good luck with the chemo! It sounds like you have a good plan in place, so I'm hoping that you'll be able to stick with that plan.

Juithen - We have 2 cats, Aurora and Arabella. We got Arabella from a rescue group last Mother's Day because our 16 year old Amanda had to be euthanized for kidney failure. DH grew up with LOTS of cats. They keep us entertained.

 

[Pea-n-Me]

Is it possible that all they checked was my CBC and did not do panels?

It's possible, but unlikely. "Routine" blood work would include a metabolic panel, a CBC and coagulation studies (3 tubes). The metabolic panel has creatinine info. (Liver function tests would probably not be done routinely.)

One of the medications you received could have caused a slight bump in your creatinine - very common with certain medications, particularly antibiotics, diuretics and some blood pressure medications. These usually go back to normal after a short time of being off the med. There are three types of "renal failure" (ie elevated BUN and creatinine). Acute; chronic; and acute on chronic. Sometimes a bump in creat is also called a "pre-renal" condition, ie bears watching. It talkes good detective work on the part of your docs to figure out exactly what's going on. Hope it resolves itself soon.

As you may have read in my other posts, I had a port and it didn't take. Within a couple of days of implantation, I had to have it removed because I developed cellulitis. In fact, a number of my doctor's patients, who were getting chemo at the same time I was getting mine, also developed cellulitis and had to have theirs removed. Her group was very upset with the hospital about it. If Northwestern was a so-so hospital, it would have been a different story. But it's one of the federally designated Comprehensive Cancer Centers. The culprit may have been a new antiseptic used to clean a sterile field prior to surgery. The antiseptic was clear as opposed to the usual orange Betadyne. The thought was that a clear solution didn't give a visual as to what was sterile and what wasn't. Anyway I'm not a big fan of ports.

I'm not either. I never posted much here about it because many people had them/liked them. But I refused one based on my own experiences seeing many types of problems with them, some very serious, and one death of a young person I was caring for at the time (which was one of those devastating cases you never forget). I had the eight doses of chemo, and they placed an IV each time. Only once was there a problem, and that was when I arrived freezing cold and dehydrated. Thereafter, I stayed really warm and hydrated on the ride in, and as soon as I got there they placed warm packs on my arm to make my veins stand out.

 

[DeeCeeSW]

One of the medications you received could have caused a slight bump in your creatinine - very common with certain medications, particularly antibiotics, diuretics and some blood pressure medications. These usually go back to normal after a short time of being off the med. There are three types of "renal failure" (ie elevated BUN and creatinine). Acute; chronic; and acute on chronic. Sometimes a bump in creat is also called a "pre-renal" condition, ie bears watching. It talkes good detective work on the part of your docs to figure out exactly what's going on. Hope it resolves itself soon.

Thanks for the response, Linda. I took Cephalexin (500 mg) for 21 days (!) after the surgery (for the expanders) and it has caused other problems of the female nature (won't go into detail, but you can guess). I mentioned this drug to my onco and he said it was unlikely that it would have caused this situation (although I have to disagree because as I said earlier, there has NEVER been a problem with my kidneys). I am hoping that this was a fluke or human error because this is not a setback I need.

Almost everyone I have seen receiving treatment at my office has a port. I did some reading too and feel it is not for me. I have always been told I have decent veins. I hope there is a nurse there who is good with IVs.

Dawn

 

[Pea-n-Me]

I'm on cephalexin now, too, Dawn, for the infection in my breast. It's not usually something that causes problems. During the surgery, they usually give strong IV antibiotics and other IV meds (anesthesia, for instance) which you probably aren't even aware of. Again, nobody can ever pinpoint an exact cause, but it is not unusual to have happen during or after a hospitalization. I'd feel pretty confident it will resolve itself (if it wasn't a lab error).

Even the best IV nurse can have trouble placing a line sometimes. Ask them to place warm packs on your arm (you can only use one arm - on the unaffected side) when you arrive, and make sure you stay well hydrated. This becomes a challenge when you're not feeling well. I hate drinking plain water, but I love flavored seltzer water, so that's what I drank. (Coffees and teas can be dehydrating, but I do like my am coffee, so I had that and then lots of water - arrived saying "clear the way to the bathroom", LOL; once we were stuck in legendary Boston traffic - in the HOV lane which is in the middle of the highway which you can't get out of. I looked like this and had no other choice but to *carefully* pee in a cup in the car while my DH was at the wheel. ) Jeez, the stuff we go through!

I started to say this when I got carried away above: if possible, try to stay relaxed (and quiet ) so you don't make the person placing the line nervous. It's really hard to work under that pressure when you know someone's upset (hey, we're all human). If you can, try to put yourself in a good frame of mind beginning the night before, using meditation/relaxation/positive affirmations, etc. It really does help. I didn't learn how until after my first chemo (for which I was a wreck), but later, it was better. We always brought a pastry tray for the staff which made them very happy (trick of the trade ). I had lots of smiling visitors stop by to say hello and thanks, and it helped make the atmosphere just that much better.

 

[DeeCeeSW]

Thanks for the tips. I will try my hardest to be calm and relaxed. I usually have few problems with needles and IVs. I will hope for the best. To me, it is better than having another foreign thing in my body (the expanders are enough, thank you very much).

Got a call about 10 minutes ago regarding the blood test--all is NORMAL, there was a definite lab error. The tests from 5/19 were run twice and the first set was normal, second set was not. The nurse thinks they may have retested someone else's vial. Nice, huh? In any case, my Creatinine level is actually 0.7, not 2.3 as they reported from last week. Big difference, eh?

Chemo will go as planned.

 

[laurabelle]

Dawn- I've been the victim of lab errors myself...better than the alternative! I also did chemo every 3 weeks...worked so far for me!

Hubby and I got news on Monday that our dear friend, his childhood friend's wife, is losing her battle with pancreatic cancer. They are expecting her passing any day now. It took nearly a year for her diagnosis, and has been at it for almost 3 yrs now. I'm just so sad and weary...

 

[jackskellingtonsgirl]

Thanks for the tips. I will try my hardest to be calm and relaxed. I usually have few problems with needles and IVs. I will hope for the best. To me, it is better than having another foreign thing in my body (the expanders are enough, thank you very much).

Got a call about 10 minutes ago regarding the blood test--all is NORMAL, there was a definite lab error. The tests from 5/19 were run twice and the first set was normal, second set was not. The nurse thinks they may have retested someone else's vial. Nice, huh? In any case, my Creatinine level is actually 0.7, not 2.3 as they reported from last week. Big difference, eh?

Chemo will go as planned.

I am glad you got normal results!! But how scary for the lab to make a mistake like that. Yikes!

Dawn- I've been the victim of lab errors myself...better than the alternative! I also did chemo every 3 weeks...worked so far for me!

Hubby and I got news on Monday that our dear friend, his childhood friend's wife, is losing her battle with pancreatic cancer. They are expecting her passing any day now. It took nearly a year for her diagnosis, and has been at it for almost 3 yrs now. I'm just so sad and weary...

Laura, I am sorry to hear about your friend. Hang in there! How are things going with the Humira?

 

[NHAnn]

GAGWTA!!
Been a busy week here - post graduation (DD) adjustments The weather has been absolutely amazing New England at it's best.

MerryPoppins...I love your idea about a contact list/method...please include me in anything you set up. Should I PM you my home e-mail??

Yikes! on mixed up lab reults

Sending healing thoughts and support to those who need them and big hugs to all!!

 

[Pea-n-Me]

Lab errors = not uncommon

 

[judithen]

GAGWTA, Ladies!

No kiddin' lab errors aren't uncommon!

After all the breast cancer hoo-ha, I had to have another endometrial biopsy because of an ongoing history of fibroids. My good doc decided a D&C would be more thorough. So in I went. Unfortunately the anesthesia didn't "take"...I was awake during the procedure even after increasing the doses...and, being that some nasty stuff had to be cut out (polyp, tumor something large), this wasn't pleasant. But I survived.

The "something big" was determined to be definitely pre-cancerous. But...the lab contaminated the other samples with another's woman's samples...and hers were cancerous...so they couldn't tell if mine were or not.

I had to go for another D&C. This time I said, "Put me under!" Turns out I could have saved myself the trouble and gone straight to the hysterectomy and oopherectomy because the new samples were pre-cancerous, too. But I wanted to be cautious and avoid anymore major surgery...just too much stuff happening in too short a time. However just to be safe, I sent my samples to an independent lab that verified they were pre-cancerous.

Now I know not to rely on only one...or even two...types of test before going into surgery. I all ready was sure of that concerning doctor's opinions...and get second and third and fourths if necessary. But I figured...probably because my husband is a chemist...that labs were C-A-R-E-F-U-L. Ha! They're just overworked, underpaid people with problems at home...like the rest of us.

 

[MerryPoppins]

Hi ladies. Sorry I haven't been around as much as I'd like. Maybe soon we can compile some sort of contact list.

Made a trip to Tulsa yesterday for our nephew's graduation. It was nice, but a lot of driving for one short event.

Today DD has an appointment with her Occupational Therapist. It's been a while since she's seen her and she definitely needs a tune-up of some sort. We're pretty excited to hear what she advises.

About to jump headfirst back into the remodeling. Ick. But I'll be so glad when it's all done. I'll be in and out, but thinking of all of you often.

 

[jackskellingtonsgirl]

Judithen - How funny that I came here to post this and then I read your post above!

My mom just called and said the results of her uterine biopsy last week are benign. She will not need a hysterectomy, just a D&C. I didn't even think to ask her if they have scheduled it yet. Maybe they are planning to do it at the same time as the breast surgery. That would make sense. Not that they have scheduled her breast surgery. Hopefully Monday.
But if they do a pathology work-up on the products of the D&C I guess the story could change again, couldn't it?

Merry - I hope the OT appt. goes well!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

judithen- That's awful! I just have this picture in my head of them mixing up your samples...ick. Good for you for taking matters into your own hands and having the independant lab testing. I think my hospital lab has made all the lab errors. I prefer to go to my local lab for blood draws.

jackskellingtonsgirl- That's great news for your mom! I hope she is able to get both procedures over with at the same time. I would expect the final pathology from the D&C to show the same... B9!

Ann- I hope you guys have a great trip!

Melissa- I hope your DDs appt. went well.

I'm doing ok, just noticing some little blips during my Prednisone taper letting me know that I am NOT cured, simply masking the disease...along with the lovely sleep issues, not to mention the crazy mood swings! But GI doc says press on! I'm going slow, would HATE to get to WDW and have trouble. The Humira can take from 2 weeks to 3 months to see the full effects. Hoping to move seamlessly from steroids to Humira only!
My kids are preparing for finals and the last full week of school. I for one cannot wait for it to be over!!! 10 more days!

Thank you for your thoughts and prayers concerning Wendy. Hubby has not received any updates from John. I hate the thought of her continuing to suffer...I hate cancer.

 

[jackskellingtonsgirl]

Hang in there, Laura! I hope the Humira kicks in soon so you can have a wonderful trip!!

 

[MerryPoppins]

DD's appointment went well yesterday. We discussed the issues and tried a few things. Our OT says she can definitely help get her back on track, so it's going to be a busy yet productive summer. I have faith in her. She worked wonders for both my kids before. The good news was that after we meet deductible, insurance should pay 80% of our visits.

Today is "pack for camp day". DD is heading to church camp tomorrow. She'll be gone a week, home for an overnight, then back for a week as a counselor in training. We won't know what to do with ourselves...childless for two weeks.

 

[judithen]

GAGWTA, Ladies!

jackskellingtonsgirl - Glad to hear about your Mom! Sure, a D&C can change the news. But good news is good news...

Merry - Good luck with the remodeling! Hope all goes smoothly and "peacefully"

Laurabelle - ooooh, what a terrible picture to have in your head! Think of me happy and smiling now...especially with WDW in only 3 weeks! May the steroids taper and the Humira kick in!

Merry - oh, you'll figure something to do while DD is gone...just make sure it's fun...your own personal summer camp

 

[NHAnn]

GAGWTA!

Avery was hospitalized from the wee hours early Friday morning until dinnertime, apparently a kidney stone which is side effect of one of his chemo drugs
They are hoping it dissolves/passes in the next couple of days...otherwise the Make A Wish Trip departure Saturday may be an issue. So any stone-zapping thoughts and pixie dust would be greatly appreciated!!

Merry--enjoy your week! DD is gone for a week now too, house/dogsitting, but it's less than 20 minutes away, so I visited today and went with her on the 3 mile walk through the woods around a reservoir that is these 2 Weimeraners' daily romp. Except for the mosquitoes it is a lovely walk. We saw a loon on the water, which is a treat. Then took her to pick out/order a cedar blanket chest that is a graduation gift. Then out to lunch. A very nice morning/early afternoon

Again...GAGWTA!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Ann- Poor little guy! I just said a prayer for sweet Avery... Faith, trust &

judithen- Absolutely! The picture of you healthy and happy is the keeper!

Melissa- The appt. sounds so promising! I second judithen's idea for your own personal summer camp!

jackskellingtonsgirl- Thank you for being so supportive here!

You all are going to think I'm nuts! Though here on the Dis maybe not! I have 2 Southwest credits worth $222 and I originally thought I would sell them on ebay, but I'm reading of people on the transportation boards having issues lately. Hubby likes to buy on ebay, but he won't sell there. I have sold a few things in recent months and had no issues. But he doesn't want to deal with selling the credits to a stranger. So, what to do with the credits? A visit to his family is out of the question as flights there are incredibly expensive and even with the credits it's far more than we want to spend. I was looking around at some of the locations that are cheap to fly around the east coast and nothing was grabbing me. Plus since we are leaving soon for Disney, we are planning on doing a few day trips over the summer (no hotel stays) and there are lots of cool places we can get to easily by car that aren't far away. Hubby said we should look at fall dates, the kids have two long weekends...one in Sept. and one in Nov. HE looked at flying to MCO the weekend of his birthday which also happens to be the start of the F&W Festival!!! I told him bounceback room discounts are going on right now and I looked up the dates and it would work so I could book the hotel while I'm in Disney. Here's the kicker, since we knew the SW credit wouldn't cover the RT for 4 we did a search and Airtran had a $54 nonstop coming home for our date, SW is a crazy $109, so we booked the flight home on Airtran. I am going to have to have a lot of patience waiting to book the one way down with SW, hoping not to spend much more than the credits are worth.
Crazy??? Probably. But I we're making memories...