Coumadin, surgery, chemo

[Nancy]

Hi Marcia-

I'm sorry about the surgery and subsequent hematoma. I am sure things will get straightened out and you will be fine.

Go on over to http://community.breastcancer.org/ubbthreads/ubbthreads.php?ubb=get_topic;f=59;t=000008

Tell the gals there what is happening with you. There are some who have had the very same thing happen and you will get lots of support.

The folks at that site have had just about everything imaginable happen, and they will help you deal.

((((Hugs))))

 

[Christina L]

Marcia -

Marcia -

Most definitely do (as Nancy suggested) get into an on-line BC support group. As we know with Vr.com, the support of others who have been there is incredible.

You are such a strong lady and taking the bull by the horns. You are gonna beat this and be fine.

You're in my thoughts and prayers -

Christina L

 

[Lynlw]

Marcia, I am sorry everything is so much harder, but Thank God on the cancer not spreading. as for your card, uggg, since you really like and trust your plastic surgeon and he seems like he really cares, why don't you ask him to recomend a cardiologist at that hospital, is it the same hospital your oncologist is a staff member at?
I willl keep praying that this becomes easier and don't have any more hematomas, Lyn

 

[Guest]

Marcia,

My feeling is that if you are confused it is because the docs are confused. It might not be possible to find someone who has ever treated breast cancer in someone with a mechanical valve. The surgeon who caused the two hematomas may not be a bad choice because at least you and he have some history.

 

[MarciaB]

I met with my cardio on Friday. He feels out of his depth on this. He had talked to the oncologist briefly, and responded that we should do what was most aggressive and necessary to get rid of the cancer. He hadn't opened the PET scan and just gave it to me. Hard for me to understand that lack of interest, it's pretty cool to look at, and included a written report of findings. He thinks the oncologist with take over anti-coagulation, as all oncologists are also hematologists. But, I think I need to change to someone who operates out of the hospital I will be going to. The cardio also suggested getting a second opinion from my heart surgeon on the operability of the affected node - probably worth the $40 co-pay.

The drug the oncologist wants to use is Adriamycin. Amongst other nasty side effects, 10% may suffer permanent damage to the heart. So, I'm not sure that the cardio is right - there are some slightly less effective cancer meds that have significantly less risk to the heart. I had a MUGO scan yesterday, to serve as a baseline for diagonosis heart damage. I'll have more as the chemo goes along.

So, I think I'll fax a letter to the cardio explaining that he needs to do some research on this drug, look at the MUGO scan, and give the oncologist a more informed opinion. And I'll find a new cardio as soon as possible, and get a second opinion.

I got rid of three of the four drains I had hanging off my body yesterday and got to see the results of the surgery. I'm not completely flat, but it's pretty lumpy - not something you want to spend a lot of time in front of the mirror with. (Makes the worrying about the heart surgery scar seem kind of silly) The pain from the surgery is nothing compared to heart surgery at least. I can sleep on my side already and am only taking Tylenol. And I'm driving myself to the mall in a little bit to get my hair cut short - and highlighted - a complete waste of money - but hey - I only got a month of hair left!

Marcia

 

[Nancy]

Marcia, there is a combination called FEC which uses something like adriamycin called eprubicin along with two others. It is a combo that has been used in Europe for many years, and is gaining popularity in the States because it is very effective, is an aggressive treatment and is less heart toxic than adriamycin. That is the one I had. It's no picnic, and I think some of the side effects are more so than adriamycin.

Just something to discuss with your onco.

Here is another site which discusses all the chemo drugs.

http://www.chemocare.com/

 

[BDMc]

Do Keep Us Posted

Do Keep Us Posted

Marcia, One of my friends at work has become very active in the breast cancer community, and she'd be happy to talk to you, or email... If you have questions you can pm me here and I'll get her contact info for you. Sounds like Nancy may have you covered for web sites etc. Isn't she great?! I really do like reading your posts. Your attitude is an inspiration! I think you are terrific! Sorry you have to go through this, but really admire the way you handle it. Brian

 

[MarciaB]

Thank you Nancy for the websites - there are so many breast cancer sites that I hadn't found that one yet - it's very good.

I called the oncologist for a recommendation for a new cardiologist. Out of the probably 50 cardiologists working out of this hospital, who do they recommend the highest? Of course, the guy I dumped 5 years ago ("Maybe your symptoms are in you head?") OK, so I swallowed my pride and called the office and talked to his assistant - Will he take me back? I have to admit that I wasn't the best patient, either. I haven't heard anything yet, the oncologist was going to come up with another name, but nothing from them either. My present cardiologist scares me - he has no experience with these cancer drugs and doesn't seem inclined to want to learn.

I let the gal do whatever she wanted to my hair - turned out a color not found in nature! So I'm going back in a few minutes to have her fix it.

Marcia

 

[Guest]

My daughter is considered one of the top hair colorists in the country. Lots of people want ones that are not found in nature.

 

[MarciaB]

Chemo set

Chemo set

Al - you make me laugh!

OK guys, I have a new cardiologist that I'll see on Friday. I never got a call back from the old guy - just as well, as I discovered that the mother of my daughter's best friend was a nurse in that office some years a ago and gave me some insight into his personality - brilliant, arrogant, prone to temper tantrums. She gave me a couple of other names (the nurses always know), one of which matched the second choice from the oncologist. So, after a frustrating series of calls to get an appointment, moving everyone else around to get the one slot he had open, his assistant called today to set up an appointment - "do you want to come in earlier?". Note to anyone dealing with the medical profession - let the doctors talk to each other, then they seem to have open schedules.

The oncologist, who spent an hour with me on Friday, really seems to be on top of things. I'm scheduled to start chemo on the 6th. The MUGA heart scan showed normal heart function and the bone scan was clean. He's taking over anticoagulation, and seems willing to work with my home testing. My cancer has a high probability of reoccurance, so they will do the chemo every two weeks for four months, followed by radiation. I don't think I'll get any more work done on the reconstruction until it is all done. Sad, as the expanders give me a funny shape.

The oncologist had never seen a lymph node light up on the PET scan where mine is - usually, if they are in the chest, they're within the lungs. So he's presenting me to the hospital doctors at their weekly meeting on Friday, where I guess they talk about their weirdo cases. Pet scans have been known to give false positives, so it may be nothing at all.

I really don't know what to expect from the radiation. I expect I will feel pretty sick and tired for a while. Everyone is different. I do expect to lose my hair, and went hair shopping with a friend on Saturday. I was very glad to have her along, as I almost lost it in the beginning. Another lady there was bald as could be, with penciled in eyebrows and getting fake eyelashes - you lose your eyelashes?!! But it turned out OK, and we followed up with a few beers and girl-talk. The new hair ("cranial prothesis") actually looks better than my real hair does most of the time, so maybe it will be fine.

Marcia

 

[maka]

Marcia

I?ve been reading all your postings and I really admire you. As I mentioned earlier I had bc 26 years ago,(with 4 positive lymph nodes) and a year of chemo. Not everyone reacts the same to the drugs, I cut my hair really short, like Twiggy (sp?) But never went bald, so you may loose some hair, and you may not. I never had a bad reaction to the chemo, but for some nausea ( no vomiting) the day it was given to me. Two weeks on and then two weeks off. It is good that you are getting a new Cardio that you feel comfortable with, but as you mention, the MOST important thing is that he/she communicates with your oncologist and vice versa. ..... doors open quite rapidly when one doctors calls one another Good luck to you and be sure my thoughts are with you. Keep posting, you are an inspiration
Maka

 

[temp69]

prayers coming your way!

prayers coming your way!

will be thinking about you. good luck.

 

[catwoman]

Marcia:

I will be thinking of you next week and sending prayers your way that things go fine.

 

[fyrfytr]

Hey Marcia,
I will keep you in my thoughts and prayers.