Holy crap this is bad - how to cope?

Trvler

Oh, as someone who got pricked about 10 times when I had my first C-section and having them almost always have trouble getting veins, I am getting a port. Actually, I shouldn't say always. Often what happens is, some inexperienced person tries a bunch and then goes and gets the more experienced person and they do it in one shot. So NOW I ask for the more experienced person right up front.

SpecialK

The good news is that in a chemo center everybody is experienced with an IV, but you can also have your blood draws done with your port as well, so there is less sticking for the arm.  If you have a SNB prior to chemo you will need to avoid using the arm on that side for the future to decrease your chance of lymphedema, so having a port makes even more sense.

Trvler

Special: Can you explain the difference to me, if there is one, between a SNB and a node biopsy? I think at one point someone said if they biopsy this node, it IS the SN? Is that right?

Morwenna

I was not able to have blood draws via my port, even at the Cancer Centre. They said they were not trained in that!

Sentinal Nodes are the lymph nodes closest to the breast, i.e. the first nodes that one might expect to become involved if the cancer spreads via the lymphovascular system. A Node biopsy might involve one of those nodes, or any other node that they want to look at.

Jackbirdie

Fantabulistic answers SpecialK!

Thank you!

SpecialK

jack birdie - you are welcome!

Morwenna - all personnel at mine could access ports - that may be the difference.

SNB is done with a dye/tracer injection into the breast tissue that deposits either blue dye, or radiative tracer, or both, into the node(s) closest to the breast - which is the most likely to show cancer. Without the dye and/ortracer a biopsy of a node, sometimes by imaging, is regarded as a FNA but not a SNB.

Holeinone

Special K, you are a wealth of knowledge. I think I understand a lot of this Cancer lingo, but cannot explain it well. You come along & bingo, we all learn. Thanks for helping newbies & and some of us that have been there, done that, but was too sick or traumasized to really grasp everything.

I had a Muga scan before my aggressive chemo. Normal results. 6 weeks ago, I had a echocardiogram because I was having shoulder surgery. ( PCP ordered it ). The tech was older, she said that those with heart issues after chemo was a much smaller percentage than previously thought. I had normal results. $1,100.

I am starting to understand why all the testing after treatment is not practical. I will get my third Zometa infusion next month. I pushed for it, but not standard of care, not yet anyway. Another procedure. Good choice or overkill? I guess we have to go with our gut on some of these decisions. The costs are as scary as the dicease. My third year in a row paying total out of pocket. I wonder how many people just give up due to the cost.

Trvler

Holeinone: I am interested in your dx. You had a 1 cm tumor but + 6 nodes. That's the first I have seen that relationship between a relatively small tumor and lots of nodes. And I assume you had the chemo because of the nodes? Did you have oncotype testing?

Holeinone

Trvler, I have seen a few ladies with small tumors & lots of nodes . I asked my radiologist how is this possible". He shrugged.

I had extranodal extension. That means the nodes were bursting open with Cancer & it was growing on the outside of the nodes. The mass had grown together & was huge. Susan Love book, the Cancer bible, describes it as " special situation with unfavorable results". My surgeon was concerned after my lumpectomy that I was stage 4 & ordered a PET scan. I told him NO, was not doing it, just start the chemo. He explained to me that if it has already metastiasized (sp) my treatment would be different. Of course my anxiety went sky high. That was 20 months ago. Just now feel that my PTSD is subsiding. ( might be the pain from shoulder surgery made me think about something else......lol....) I have always been active, it bothered me that people assumed I was depressed. No, I was fighting for my life & was sick from chemo.

Dealing with friends/relatives was difficult. They all meant well, but was exhausting trying to convince them that it is what it is. I live in a small town, everyone knows everyone.

I also have a realistic grasp on my risk of recurrence. A nurse practitioner told me my odds were uncertain. I about jumped up & hugged her. She was being honest without treating me like a child. The whole process has been a €#~* nightmare. But, life goes on...It bothers me that some people think it is about losing your hair.....sheesh.

Trvler

I don't know. I try not to be too hard on people but not very many people know about me yet, either.

My issue is that I feel like a lot of doctors are extremely condescending. I have met 8 doctors so far. Three BS's, two MO's, a radiologist, a PS and a RO. Out of those, at least 3 really turned me by acting like I was an idiot. To me, that's way more frustrating. I have done a lot of research. Do I know as much as doctors? Of course not. You can be the smartest guy/woman in the room and maybe you are but don't treat me like an idiot. They don't like to be questioned, that's apparent. They just want you to take their word as gospel. I think many people do. I wish I could.

Jackbirdie

Trvler- very not right to be treated like an idiot. These people should treat us, at a minimum, as partners. Co-advocates. Whatever. They should be happy you take ownership and do the research so your time together can be more productive and valuable for you both. It just makes me shake my head

Jackbirdie

-holeinone- I was thinking more like heroine when I first glanced. It is so very important to be treated with respect and honesty. Doctors do know a lot. But it seems when they first make their decisions about becoming one they are young and idealistic. By the time they figure out what they've done to themselves, they are trapped in their own American Dream. They aren't suited for it. It does NOT make it right that we have to suffer for their bad decisions. It is so rare to find a medical professional who can balance brain power, empathy, patience, and other key traits that make long term relationships with very sick patients successful. I'm glad you at least found one.. hugs.

Trvler

Me, too, Jackie. But to me it speaks more than anything to what kind of person they are. Just because they are a doctor, I guess, doesn't mean they are a nice person. I agree with you about what kind of people ideally would be doctors.

My OB is pretty good. Either than or he is feeling terribly guilty about not diagnosing me correctly sooner. He has called me regularly to ask what is going on. It's quite surprising to me, actually.

Zillsnot4me

You may have more tricks up your sleeve now that you've had more than one infusion. I'm sorry I'm late sharing mine.

Ginger tea. Thinly slice about an inch of root. Simmer 10 min. Strain. Sweeten. I had mine cold and added a green tea bag. Best thing for nausea. Also kept something in my stomach. Dry cereal, oyster crackers. Felt better the last week before the next one. Ate then. If it sounds good, it will probably agree with you. You can be healthy later. Caution: white foods can bind you up. Another hellish SE. Stay on top of your stool softeners.

Mint chewing gum.

Piggy backed my anti nausea meds. Had Ativan at night to relax stomach. Was on an acid reducer. Had IV Ativan during infusion. That helped tremendously.

Claritin works for the pain from the injection.

As horrible as that first one. I felt like the walking dead too. I'd do it all over again in a heart beat. I lobbied for two extra rounds. Next month is two years and I expect my scans to be clear.

You'll be surprised how quickly you bounce back to eating. However it may take awhile to like certain foods again. Don't eat your favs while doing this. My tastebuds have changed. Saving big bucks because lost my taste for Starbucks.

Good luck. Keep us posted.

208sandy

Zills - hate to burst your bubble BUT I lost my taste for Starbucks too - 7 years ago and two years ago it reappeared with a vengeance!

Trvler

Catlady: How are you feeling?

placid44

Ditto, SpecialK you are very well informed and greatat explaining things.

catlady44

Trvler I'm hanging in there. I've had 3 AC's and none were as bad as that first one. A couple weeks ago I stubbed my toe pretty bad and was put on antibiotics and that has really done me in. I've always had problems with nausea and fatigue on antibiotics, so adding that has really made things worse. I'm off those now, but the effects kind of linger. I think now that I know how I feel after these new treatments, it isn't as scary as that first time. The most severe side effect is wekaness and fatigue. Of course there's all the other things like, mouth sores, skin getting yellow and I have a migraine pretty much every day. I've had a lot of help from my mom which is great. My husband, not so much. I feel abadoned by my closest friends and I don't get it. Every one says, maybe they're having a hard time facing that you are so sick ,etc., but that makes me want to scream, "Oh I'm sorry I'm making you uncomfortable, TRY HAVING CANCER!

My surgery date has been set for June 5 and I'm pretty nervous about it. I've never had a procedure done that was this invasive. I'm scared of the pain, and I even have a high pain tolerance. Discomfort - not so much tolerance there. Probably why I'm miserable right now.

Thx for all the tips everyone has given me!

Trvler

Awww….I am sorry you had to go on the antibiotics on top of it all. And about your friends. Get some new ones. We will be your friends.

What surgery are you having?

Jackbirdie

I second Trvler's motion. We will be your friends.

I don't know why our "friends" do what they do. I had one friend who was very, very important to me. After my dx, she literally walked away. I made a few sputtered attempts to reach out, but I finally caught on. She has never called me again.

My best friend in the world even. She simply was not present. I finally could not help myself. I confronted her. She said she had problems of her own she could not discuss with me. She hung up. After a few very sad days she called back. She had reviewed her email, phone, and text records. She saw. She apologized. She booked a flight. But our friendship was very much on the line after 30 yrs.

Then there are the people you've lost touch with already. Many come back. Some just want to watch the train wreck. Others step up. I think you just have to be alert to the new possibilities, and grieve naturally for the losses. I know some marriages don't make it. Some get stronger.

GD cancer changes everything. The physical pain, the fear, the humiliation of the constant poking, sticking, waiting for results, side effects.....it is so hard for me to imagine why so much OBVIOUS suffering doesn't engender sympathy and appropriate action by people who have claimed to care for us. One of the great mysteries

Trvler

I know it sounds weird but I had a friend come back and that makes me uncomfortable, too. She has put every one of my chemo treatments on her calendar. I guess I should be grateful but it feels weird to me.

AnewBeginning

Catlady

I hope by now you are feeling somewhat better. I too will be getting A/C in 2 weeks and am terrified of the side effects. Hopefully

not all your treatments will be as severe.

(((hugs)))

catlady44

Thanks for everyone's kind words! It really means a lot to me. I told my best friend from college about my surgery date and didn't hear from her for days. She finally contacted me to say she was getting a minor outpatient procedure done, as if that somehow compared to this dismemberment I'm facing. Trvler - I just wish she'd stayed away too. i don't like in and out friends, but I don't have a huge social circle to start with so I feel like I have to take advantage of the friends I have. I've always been a solitary person and prefer a few good friends to lots of casual ones.

Jackbirdie - I can't believe your friend did that! That's just BIZARRE!

Anewbeginning - there are so many different ways they manage side effects that you should be fine. Don't let my message scare you! I've sort of gotten the hang of it now so it's not as traumatic as that first one. I have yet to vomit and that was my biggest fear! I get Aloxi and Emend for the nausea and decadron to boost those, and I have only minor nausea. One thing the nurse told me to do was to start taking the Compazine/Zofran every 6 hours whether I needed it or not because it's easier to prevent nausea, than to try and get it under control if it gets bad. The fatigue/weakenss is the worst side effect for me and I consider that getting off pretty easy. Let me know how your first treatment goes. I'm sending positive thoughts your way

clarrn

Catlady- I had a terrible time with AC too and also had the migraines. Turns out that it was the zofran causing the migraines. They switched me to granesitron and though I never did kick the nausea at least my head felt better. I know you only have one AC left (woohoo!) but you might want to try.

Momine

I had epirubicin, which is like adriamycin, also known as the "red devil." It did damage my veins, but the veins eventually recovered (took about 2 years). If you have a port, doesn't it just damage other veins?

Heart damage, I had a MUGA before and after. Also, during the first infusion, my onc sat behind me with a stethoscope on my heart the whole time (the red devil part of the infusion is only about 10-15 minutes) to monitor how my heart was doing with it.

Nausea, they gave me emend during the infusion and for 2 days after, as well as 2-3 other meds against nausea. The meds can give you a headache, but I would rather have a mild headache for a few days than puke.

clarrn

Mild headache or bad would have been manageable. Migraines are a whole other story and for me the granesitron worked the same as zofran. Nothing ever worked for my nausea although they threw the book at it and they did manage to stop the puking. But it's over and I made it through

Trvler

Catlady- "I don't have a huge social circle to start with so I feel like I have to take advantage of the friends I have. I've always been a solitary person and prefer a few good friends to lots of casual ones".

This is exactly how I am.

catlady44

It sucks that they have to tear our bodies apart just to treat cancer. One drug causes another problem, etc. Feels like we have to always choose the lesser evil i.e. heart damage or dying of cancer. ......

Trvler

Cat: That's exactly what it's like. I tell my husband 'why can't there be ONE good SE from the treatments, like you get to your goal weight' or all of a sudden, your libido goes crazy." JUST ONE. lol

catlady44

Or maybe the power to fly or the ability to throwing fire just by using my mind ala Carrie! LOL Seems like we should get SOMETHING of the ordeal!