Starting Chemo March 2015

Jackbirdie

forgot to mention we had the home inspection yesterday. It was all pretty good, only a couple minor issues that won't break up the deal.

I took Jack and the seller invited him to come inside and check things out, sniff their dog's butt, etc., then we turned him loose in his big new back yard! He tore around like a puppy! I was very happy.

Another box checked off!

so-she-did

Thank you Katy. Your words are like a salve. Waiting for results has been my Achilles heel through all of this. If anything can bring me to my knees it is thinking the worst to the point where it consumes me.

Soooo, I am getting out my book and treating myself to a glass of wine in an effort to nip the perseverating in the bud.

so-she-did

Glad the inspection went well! I see Jack was put in charge of inspecting the yard - hahaha!

Trvler

That helps me, too, Katy. I am feeling pain in my breast still. (I now understand why people have surgery FIRST) AND I could swear my nodes are swollen in places they weren't. Also, I have some pain in my neck on the cancer side which might be muscular but now I just can't stop the worries. I never used to be a worrier at all.

Not only do Jack and Tutti seem to get along ok, they seem like they really enjoy each other. Am I right? Maybe Jack needed another friend, too. I am so happy it worked out for you. And you got it to get rid of the rodents in the back yard, right? Did it work?

ksusan

I'll take as much lorazepam as I can manage before the port removal next week! I'm not looking forward to an office procedure, but I don't want another day surgery with anesthesia!

ROs are, like MOs, different in what they want. Mine said yes to everything I want to add back after chemo except antioxidants and Omega-3s.

After I started L-glutamine, I stopped having most of my chemo neuropathy and even some of my diabetic neuropathy (they feel different to me). My RO is cool with me continuing it.

Jackbirdie, great about the house!

We will monitor and support each other. I have an exercise/diet weight loss goal in the Race against Tamoxifen! How much weight can she safely drop during radiation and before starting Tamoxifen in late August? If I were a betting woman, I'd put my bet on the 5-10# spread! Ladies, that will take her to her LE specialist's and naturopath's first BMI goal!

Trvler

ksusan: Why no antioxidants?

Jackbirdie

KSusan you are too funny. Let's all race against Tamixifen! Haha. Btw, you rocked the swimsuit in the April thread where I was lurking awhile ago and totally jealous of your food! Unlike you, I will insist on aday surgery when I'm lucky enough to get the fuc$er out! I'm the biggest wuss among us!

Allison - you might be right that Jack needed another friend. They are enjoying each other. The only think you missed were the rats were over my head in the attic and in the basement. We (Jack and I) could here them coming up through the bathroom pipes! So effing GROSS! But since Tutti's arrival, not a peep. She's of course not big enough to fight one, but I think the "feline smell" must make our digs less rat hospitable. The landlord also did some work to deny access, but I'm giving little Tutti all the credit. Cute and a good worker too! And so very entertaining!

Amy - bully for you on the wine and the book. That's my girl!

Carrie37

Jack and Tutti are so darn cute!!!

Lovemylab

Katy, my daughter swears by a cat to get the rodents running! Glad jack approved the yard. I'm sure tutti will love the house if you are there!

Had 4/12 Taxol today. MO was not happy w dropping hgb but I thought 9.6 last wk to 9.5 this wk was great. No sig difference or holding steady. He offered a transfusion! I said no way.

Also found out he wants me to stay on twice a day lovenox shots untildone w chemo. I'm ok w that part as I feel safe on it. Don't wany any more blood clots!

Everyone else, congrats if you are done ! So jealous. I'm busy losing my eyebrows and feeling fatigued. MO admitted today this is a very intense chemo program. Yea I said, for stage one!!! It better not ever think of coming back. Now I need a nap.

Maureen

Jackbirdie

Maureen no kidding on the seeming overkill. It better fucking not come back!

33% through Taxol today! 🎉🎉🎉🔔🎉🔔🔔🔔. You have earned that nap

SpecialK

Yes, unfortunately there is late onset neuropathy - it is a thing, although I believe it is more commonly late onset with Carboplatin.  Personally, I would do the L-Glutamine, 30g daily (3x10g) throughout chemo and beyond.  It can take months for the neuropathy to completely dissipate, and it is not unusual for it to linger or for certain areas to become permanent - or flare in weather extremes - particularly cold.

trvler - maybe mix your l-glutamine with the least acidic juice you can handle.  I didn't take mine with water - couldn't deal, lol!  I did try mixing it with applesauce - HUGE mistake - turned it into chalksauce.

Jackbirdie

and now..... Jack cramming himself into Tutti's bed. Friendship or dominance? Or just a warm spot in the sun? Funny though. He never sleeps in his bed. Maybe this feels cozier.

ksusan

Trvler, they're concerned that antioxidants can interfere with the treatment. However, as I'm sure you've noticed, different docs have different rules. I was told to go ahead and restart my vitamin B later this week, for example.

Jackbirdie

this is one of the things that bothers me THE MOST about bc. They can't agree on basic things. They test some things 100 times and leave wide gaps in research elsewhere. It does not help to be strong mentally when treatments themselves are in such doubt. I really hate it.

You could be missing out on something that might really help. You also might be doing something that will negate or mitigate other treatments. WTF?

It leaves me feeling much like a deer in the headlights must feel. Which way to cover? Is that light an oncoming train?

Really really FUCK CANCER

Italychick

My MO didn't restrict antioxidants, but I did, 3 days before treatment and 7 days after.

I never want to do chemo again so I figured it was worth not taking antioxidants since there are so many different opinions about them.

Met with RO yesterday, he agreed no radiation given my past history. He said given my stats radiation would probably only add 3-5% risk reduction for me, and if an area got hit with radiation a second time, it would cause some significant problems. He told me radiation stats lump all stages and grades together. I guess only time will tell. In my mind, I think either it is going to come back or it won't. After seeing all the recurrences with women who did mastectomies, rads, chemo and hormonals, I realize there are no guarantees.

Feeling a little odd today about treatment ending, but I still have Herceptin until March, and he said that is a powerful drug. He also called chemo the big guns and said I had a lot.

So now I wait to see if I get depressed and anxious worrying and waiting to see if it comes back. I hate it.

slothabouttown

Aagh! I started taking B vvitamins about 2 weeks pfc and now I'm on my #20 rads. I wonder why some docs say no B vitamins?

I don t have much opportunity for discussion with my RO. He is in and out of my appointment in about 30 seconds, no joke. Just long enough to look at my chest then get out of Dodge. Today he came in and told me what to expect as I'm ending treatment and since I had such a good response see to chemo I have little risk of recurrence. I asked him how he knew I had a good response to chemo and he got flustered and realized he was looking at another patient's record. He went on to correct himself by saying we didnt know anything about my response to chemo and that I had disease in and beyond the lymph nodes so I'm not so lucky as the patient he had confused me with.

Are these doctors really in such a hurry that they forget they are commenting on our life expectancy? Do they understand that confusing us with some other patient can send us into a panic attack? "Oh wait, you're the one with the shitty prognosis, sorry, okay well see you tomorrow!" And if they can't keep us straight in the exam room, I guess I'm thankful that they're checking our birthdates every five minutes cause I could be getting that other, less messed up person's treatment! I trust the techs and nurses more than the doctors at this point.

SueH58

Theresa, when you said you stopped antioxidants before and after treatment, do you mean supplements or foods with antioxidants?

Amy, is it normal to get a brain MRI post chemo? I thought my Dr. said I wouldn't get any scans, though I see her on Monday. I'd like to have a good scan...

Italychick

sueH58, I stopped supplements. Everything I have seen has said food wouldn't be an issue. I'm not even sure what foods are considered antioxidant rich, I guess stuff like blueberries? during chemo, it was pretty much eat what I could and not worry about that part.

Jackbirdie

Sloth- that was very, VERY poor treatment you received at the hands of your RO today. He needs to slow the fuck DOWN. I am very angry and I know you are too right now.

I might work on drafting a letter outlining his thoughtless, dangerously thoughtless behavior, to be delivered on the last day of tx. It doesn't have to be rude. Just the facts. It almost seems like malpractice to me, with the emotional damage that could do to a fragile patient.

And guess what? We are all fragile when it comes to our life expectancy. You have the most wonderful sense of humor, Sloth, and you keep us all in stitches. But this is no laughing matter and I'm glad you shared and vented to us. I wish I could give you a nice gentle hug and we could sit and make up terrible things to say about that dicktor. Yes that is the correct spelling.

Please try not to dwell on this incident. As we've all been told, knowing, or thinking we know, about our recurrence rates, prognoses, life expectancies, etc., does not change the outcome. It only changes us. Better not to presume what all of these experts can't figure out. So why would we be able to? We cannot.

So therefore, back to Plan A. Live the best life you can. All the time. It will never be a perfect life, but it can be a conscious and aware life. I wish that for you, tonight and every night, you feel pleased with your day when your head hits the pillow. Aim for that. It's a big job, but every evidence I see proves to me that you have the smarts, and the heart, to get that done. Ok? Good. Big hug. Katy.

KBeee

Sloth, I echo what Katy said. That is horrible and unacceptable. I am sorry you were treated that way.

wpmoon

I've been dealing with my doubts about why I'm not getting a scan of any sort now that chemo is over. I fully accepted my doctors and we when I first asked the question. He said he didn't feel it was necessary since I didn't have lymph node involvement, and due to my age, he didn't want to expose me to any excess unnecessary radiation. But now that it's been a few weeks, I'm second guessing it and wondering if I should request it.

I've had the worst diarrhea to date the past day and a half. Called the advice nurse today, then talked to a doctor. He said pepto bismol and Gatorade, then call the oncology department in the morning.

I just want a normal day.

LorettaP4

Feeling depressed.... I just finished round 5 of 6. Should I even bother getting some meds for this knowing that I should soon be finished? feeling like I shouldn't add one more drug to this already tired body.

BBwithBC45

Wpmoon, I was wondering why I wasn't getting any scans and asking my husband how can we know that I don't have the disease somewhere else. My husband is a doctor and told me the same things your doctor said, about not wanting to expose us to more radiation than absolutely necessary since there is no node involvement.

Eventually I ended up having CT of the neck and the brain, because I had nearly constant nausea, blurry vision, and painful node in my neck. No other scans.

Italychick

wpmoon, a doctor recommending you do rads then saying he doesn't want to do a scan because of radiation? Wtf? How stupid does that sound? If all else fails, an opiate drug will constipate the heck out of you, so maybe it would help. That would be Vicodin, norco, Percocet, Tylenol with codeine.

I got a bone scan and a pet scan, my MO told me she was going to. The PET scan scared the hell out of me and she said Theresa, whether you know or not, if something is there it is there, and best to know now so we can treat you appropriately. I'm pretty sure she will be scanning me in another few months.

The one thing I am going to ask for are ultrasounds, and maybe an MRI occasionally. The ultrasound was spot on with my tumor, and it is pretty non-invasive. Because I still have dense breasts, I'm not even sure how they can read a mammogram correctly. I looked at my images, and I saw areas that looked worse to me than my tumor, but the radiologist said that my tumor was the only area of concern. The MRI, PET scan, and bone scan confirmed it.

Lorettap4, what meds are you talking about? Getting correct stuff will help you get through chemo easier, so if you need them, you need them. It isn't forever, just for a few weeks. If I had needed them, I would have taken them. I lived on Pepcid AC for two weeks after chemo round 5, no shame.

Jackbirdie

Loretta- Welcome and sorry you needed to find us here.

I apologize if I assume incorrectly, but I interpreted that you were wondering about dealing with your depression. If not you can stop reading now, and I apologize.

It would be hard even for a mental health professional to determine if your depression is a direct SE of chemo, or whether (and you would have every right to) you are depressed because you have cancer and are worried about your future.

I totally get not wanting meds upon more meds. Moreover, imf you will be needing Tamoxifen, several anti- depressants are contra- indicated with Tamox.

Another way to approach this would be to see if your cancer center has cancer specific patient counseling available, or if not, if you could find a referral to such a counselor/therapist/specialist. There are many tools we all need to learn to deal with all of this now and going forward with cancer as part of our life.

Once you sort a few things out, such a professional might be able to help you come to a decision as to whether meds could further help.

My personal opinion is that depression is not solely a switch that chemo turns on in your brain. It's s combination of factors that can trigger brain chemical imbalance. But as I said at the beginning, it will be a hard question for even the most sage of professionals to answer.

I wish you the best in your search for answers. I think it would be more strange if you were not depressed over the situation you find yourself in.

so-she-did

Sue, I had a problem with dizziness prior to my diagnosis so I asked my MO for the brain scan.

Loretta, I've been struggling with depression, too, so you are not alone. it wouldn't hurt to at least talk to someone about it.

slothabouttown

thanks Katy, you all have had some great advice tonight regarding scans and depression, and all that goes with this navigating through this dang cancer business.

molly1976

I'm also not having any post-chemo scans and it makes me pretty nervous. My MO really feels strongly they are unnecessary.

IndyGal35

Good luck with your scans, Amy. I agree that waiting and uncertainty are the hardest parts, but I'm glad they are being so proactive with you. If I could get weekly scans, I'd sign up.

Great news on the homefront, Katy! I'm hoping the process continues to go well.

Theresa, I'm sure you have mixed feelings about the rads, but you are closer to the end of this mess than you had expected. Try to look at not having to go through rads as a bit of a reprieve.

Whitney, I agree with Theresa. That just sounds silly. The normal days will be coming soon. Do you have a start date for your rads yet?

IndyGal35

Linda - I'm still just shocked by how rude and insensitive your RO was. Seriously. On the other, better hand, I can't believe you just finished round #20! It's encouraging to see you getting so close to the end of this part! :