newly diagnosed

Sharon · Guest

Dear Margie, Lee and all:

You are my internet angels. I look forward to your responses as they give me hope. I will go to a chemo class on Tuesday, meet the oncologist for the first time on Wednesday, return to the surgeon on Thursday, and am scheduled for a port on the following Wednesday. Many tears have come and gone. It has been suggested that lymph node removal is primarily for staging purposes not irradication of cancer. I am anxious to see the path report. I want to make sure that the original site has clear margins by at least 1cm as the surgeon initially reported. Then I can make a decision about more surgery. You all are so very brave. This is such a bizarre disease...and I really don't feel physically sick, but emotionally challenged and heart sick. It is amazing how quickly your total outlook on life changes. I am sold on the port now. Blessings to you all for caring enough to help me. It has been hard on my friends who have gone through this as it brings it all back for them. The good news is that they are all thriving and survining. We are all nurses, working in the same place and I made the fourth one in the last six years to have a breast cancer diagnosis. This this is four out of twelve. Two have had mastectomies with chemo/ radiation, and one lumpectomy with radiation. I see breast cancer everywhere I look now...in the mail, magazines, and even ads on tv for procrit and neulasta. I know I am not alone, but what an ardous journey. Bless you for sharing it with me. In love and spirit, Sharon

Kristen · Guest

Hi SHaron,
I am new to this site and have found it very very informative. I have been reading all the postings under this thread and let me tell you that your journey is beginning to sound like mine over a year ago.

I just wanted to let you know that when I had the sentenal node dissection that my orginal path came back negative nodes so I was pretty happy to receive that information. However I later received a phone call after they had done the permanent slides where they found one postive of three nodes. This information was hard to hear because now I had to make the decision on going back in to remove more nodes. Well I did not know as much before as I do now (especially the lymphedema. I was not informed at all about the increase in this additional node removal and with radiation. So I did go ahead and they removed 13 more nodes all of which were negative (thank god). I have recovered really well from the surgery and have no signs of lymphedema and hopefully never will.
As far as the chemo, I was on the same a/c and taxol dose dense (every two weeks) with daily nuprogen shots. If you have to go through this, I just want to tell you that its very duable. You will be able to get through this, its a long haul but well worth it. Also HER2 ...did you get the results from that yet? This test is very important and you may want to get the results in order before you start chemo. I was strongly positive which is not good, it means its very aggressive. However, once again during my ignorant phase I did not know to inquire about that at the time, which is unfortunate because there was a trial going on using Herceptin along with the chemo for HER 2 positive patients.
I am also on tamoxifen and have been for a little over a year, and that is not so bad either. If you have any other questions I would be glad to help you out any way I can.
Kristen

Lee · Guest

Sharon,
Its been a little while since I have posted. I also did A/C and Taxol and it is very doable. I had trouble with my crohns and was in the hospital a few times but I was very determined to stay on the two week schedule. In the end a was a week and two days off but it was because of my other issues not the chemo. I am also er + and her2nu +++. The way my Dr tells it the her2 is only a problem if you have cancer and he says I don't anymore, so I pray he knows what he is talking about. I am now doing rads. I am having trouble with my arm but the Dr jumped right on that so I am hoping it won't get any worse. I wish you the very best with what ever you chose to do and if I can help let me know. I read everyday even if I don't post.

The best to you
Love Lee

Sharon · Guest

Dear All:
You all give me such hope. The thought of dose dense chemo was overwhelming. But...I will do whatever it takes. Glad to know that it is doable. I am still waiting for the Her2 test. A Pet scan has been suggested to check out the other nodes without more surgery. I would hate to have lymphedema in my right arm, but it beats the altenative. Hopefully, tomorrow I will learn more from the oncologist as it will be my first visit with him. You are all so courageous. It helps to know that others have walked this difficult path and made it. You have my respect and admiration. Sharon

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Dear Sharon,

Glad to hear you're sounding much more upbeat and hopeful!

It sounds like your doc is really covering all the bases - ordering a pet scan rather than dissecting axillary nodes. I am getting the impression that they would not change your therapy even if they found more positive nodes. So...it makes sense that they are trying to keep your chances of developing lymphedema to a minimum.

Good luck with your onc appointment tomorrow. Remember to bring your list of questions with you! We will be here for you.

Hugs,

Margie

Sharon · Guest

Just a quick update. I have been soooo busy and have seen soooo many doctors. I went to a chemo class last Tuesday which I regret. It was so overwhelming. If the neutropenia, low platelets, and nausea weren't bad enough...it was suggested that my animals not share my bedroom. I couldn't recieve any flowers or plants from my friends. Of course don't use any razors....but"then you won't have any hair to shave anyway." The diet was also overwhelming. Too much to give up...all at once. I won't change the kitty litter box, but I refuse to give up my animals as they are my true spirit lifters and healers. I felt like I was on the road to Dachu (SP). I said just don't make lampshades out of me. Dark humor I know. So it will be dose dense every 2 weeks, Adriamycin/Cytoxan x4 followed by Taxol q 2weeks x4 and then 6 weeks of radiation. I learned that my eye lashes will go with the taxol. I am having a port put in tomorrow. I had a cardiac echo yesterday. Chemo starts on Nov 18th. i tried to work it around the holidays. I will get Aloxi and Neulasta. The oncologist is young and bright. I wish I had seen him before the chemo class. At least he offers hope. I am HER2 negative. I just learned that the surgeon wants to present my case to the tumor board again tomorrow. I think she may be worried about the other nodes. All for now more later. I know I will need more of your expert advise regarding the chemo. In love and spirit, Sharon

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Sharon,

Thanks for the update! I have thought about you and wondered how you were doing. That's great that things are starting to roll - the sooner you start the sooner you'll see the light at the end of the tunnel.

It sounds like your hospital is really on the ball as far as preparing patients for chemo. My hospital (rural, hillbilly hospital) did not have a chemo class and they really tended to downplay the side effects of chemo. Totally different attitude. I think it sounds like they are taking really good care of you.

I did not do dose dense A/C, but I did it every 3 weeks. I don't know if the side effects are different like that. I think I heard that they are. But if you have any specific questions, I'd be happy to answer them.

One of the most important things I learned was water, water, and more water. Drink lots the day before your infusion, the day of and the day after. I drank 2 quarts a day. By the time I finished chemo, I didn't want to see water any more! LOL I always brought a water bottle with me to the infusion and just kept filling it.

Bald is beautiful!!!! That's what my chemo nurses told me and they were right! It really was not that bad being bald! There are advantages - it's so QUICK getting ready in the morning. Nothing to towel or blow dry. Just throw on a wig or a pretty scarf or bandana (I did not have a wig, only scarves and bandanas) I did not go au naturel because my head did get cold, especially since it was during the cold months. DH thought I looked very "hot." LOL And when it grew back in it grew back soft and eventually became very thick.

Sharon, just try and keep a positive attitude. We are all here for you with any questions you may have. Remember - laughing is good for your immune system, so keeping a sense of humor also helps!

Take care and keep us posted.

Hugs,

Margie

DiO · Guest

Hi Sharon!

Sounds like the chemo class wants to err on the side of precaution! I did dose dense chemo, and it was rough, but doable and over so much faster! I have a cat who spent the biggest share of his time on my lap with no ill effects. Just be sure to wash your hands often and thoroughly--I thought I'd wear mine out!! My cat also slept on the foot of my bed every night, but my husband caught a cold and slept in the guest room for a week or so! Also never heard the no plants thing, but you do need to be careful about being around anyone who may be coming down with something--especially young children. I was unable to work much since I work in retail and my doc didn't want me out in public while my counts were low, which they are even with the neulasta--it doesn't seem to keep them from dropping, just brings them back up faster so the time you're most suseptible is shorter. Of course with the dose dense they then hit you again right away! Hang in there and before you know it you'll be done! God bless, Di

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi,

Can someone please tell me why the pet dog can't sleep on the bedroom floor? Also, I never heard about the plant thing either. They never mentioned any of this in my chemo clinic. My dog always slept on the bedroom floor the whole time. I'm just wondering why they can't come in the bedroom at night but can hang around the rest of the house all day? LOL

Sharon, I think it's good they're being careful and looking out for you.

Hugs,

Margie

Sharon · Guest

Dear all: Well, the port is in. That was the easy part, the hard part was the recovery from anesthesia. I had a headache with nausea and vomting which took about 6 drugs to tackle. I couldn't wait to get home and go to bed. I am fine now, but it was a rather rough week. I had my hair cut very short on Tuesday, the port on Wednesday, and was feeling sorry for myself as I missed a trip to Mexico on Friday with seven friends. I bought a wig and have started practicing with scarves. Time and life goes on. I will plan to hydrate well before and after the chemo. I have a soft tipped tooth brush and have been advised to rinse with baking soda and salt frequently. I will wash my hands and keep them away from my face. Boy this cancer chemo path is a busy one. I think you are all correct that I will feel better as I am actively doing the therapy. for those of you who had a port did you have to take Coumadin? I am not thrilled about taking it. Hugs,Sharon

DiO · Guest

I had a port and it was mostly pain free and trouble free. It was put in the day of my first chemo treatment and removed about 3 months after the last one. I didn't take any meds for the port, no coumadin. My chemo was every two weeks so the port was accessed for the treatment, and occasionally for blood draws. No flushing was necessary in between--I guess it can be 6 weeks between flushings. I understand there is a topical anesthetic cream you can put on before the draw/treatment if you're particularly sensitive to the needle prick. I didn't need it--barely felt the stick, but I think that depends a lot on the skill of your nurse as one time when I had a sub I really felt it--ouch! The most uncomfortable part for me was that it was placed just below the collarbone on my left side, so when I drove the seatbelt was right over it--didn't really hurt but was very annoying--small price to pay! I did see some people in the chemo room who had ports that didn't work very well on occasion, but mine always was really cooperative. Wish you the same luck with yours!

God bless, Di

PC Allen · Guest

[quote="Sharon"]I just got the results of my core biopsy yesterday. I have a 8mm, invasive ductal carcinoma with a low miotic level. I can't see the surgeon until Monday afternoon, Oct 18. Any words of wisdom, advice, and coping hints would be greatly appreciated. My anxiety level is beyond me at time with tears near the surface. It is very difficult to tell others. I hate giving bad news especially my own.[/quote][quote]

Not sure if I am replying right so bear with me. I am just now going through this except mine was non-invasive. I can only tell you what has happened. I had surgery to remove the calcifications and a margin area around which was then biopsied to be sure all cancer cells were gone and margin clear. Unfortunately, one area was not clear and I had another surgery which turned out o.k. The surgery was a snap compared to the many others I have had. It is outpatient with a little pain rest of day and some next day. Very small taken out and no one would notice it. I did not take anything except Tylenol because other pain meds make me sick and dizzy, but he did give me a Rx for others. You keep tight band or sport bra on 24 hr for 2 weeks, then stitches are removed. I took first ones out myself as did not want to travel 75 mi. for that. It just amounted to snipping of one end of thread and puttling other end through-did not hurt. I go back this week and expect then to be set up for radiation though I dread it as I have RA and am very tired anyway, but this seems to be the normal way it is done. Eat chocolate!!! (just kidding)[/quote]

Sharon · Guest

[size=12][/size] Rolling Eyes

[b]
Dear Wise Ones......Well, thank you once again for all of your responses. I had the PET scan yesterday and tomorrow I will start chemo. I will be relieved to actually start. I did start the coumadin. So, the journey goes. With blessings and gratitude, Sharon[/b]

BFagan2067 · Experienced user Joined: 07 Oct 2004 Posts: 54

Sharon, I have not been following this whole thread but I did note that you were starting your chemo tommorow... hope you started drinking your water already...Lots of it remember Smile

.. also that cream that was mentioned on a previous post is called Emla cream (brand name) they have a generic which I have upstairs and am to lazy to go and get to type the name Smile

but anyways, You put that on the area of your port about one hour prior to your infusion and put saran wrap over it... or that new press and seal wrap works great! I actually have a port flush this afternoon so will be using mine today. I have had my port for almost 6 years. No i never took cumiden but i know of many that did. I have it flushed every month which you will not have to worry about as that your chemo is more often than that. Believe me when I say that you will be the envy of the infusion room and the nurses will love you, all because of that port.. it is so much easier then doing IV's all the time. I still have mine for other reasons other then chemo, which I have been over and done with for four years now. I just wanted to wish you the best and to let you know that it is real important to stay on top of any nausea that you might have.. hopefully you will be able to avoid this, but in the case that you are not please be kind to yourself and make sure that you call into the onc office if you do have it and your meds do not work, dont be afraid to bother them or anything as that they will be able to call you in other meds if you need them, different meds work with different people.. dont hesitate to call them I am sure that they will tell you that... and remember water, water, water...and dont get shocked when your urine is red... that is the chemo, some people are not told that and get scared when they see it... also they get scared when the see the onc nurse coming to them for the first time with the chemo in the huge syringe.. I dont know if they still have to use that to administer the andriamycin but when they first brought it to me I said what the heck do you think that you are doing with that? They actually "push" it by hand into your tube...but it looked like something out of the cartoons...LOL.. Best of luck to you! Hang in there!
HUGS!
Barbara

Sharon · Guest

Dear all: Well, I have survived the first round on chemo YEH!!! worked well and I think I will be glad that I have it as I watched someone being stuck more than once while I got my chemo. The nurses were great and did all they could to give me a smooth ride. It was. I got 1mg of Ativan first, then Aloxi and Decadron, then the lovely red potion of Adriamycin followed by the Cytoxin. EMLA cream was ordered for the next time. I also got Emend for three days. I have been blessed not to have any nausea or vomiting. I do feel occasionally queasy, but it is tolerable. I keep hearing your advice on drinking water and am doing so. I had a red rash on my cheeks yesterday morning and I called the NP. She reassured me that it was from the Decadron and it is gone today. Any tips on foods to eat or not eat? I think it would get old fast eating white bread and chicken noodle soup.
The Pet Scan was clear and the Echo was OK....I am trying to stay positive. It just seems like such a long haul, but will just go one day at a time. It is a bit of a relief to be on the train instead of being frantic in the station trying to decide where to go and what to do and all those decisions.

Wishing you all a very special Thanksgiving. We all have much to be thankful for.....and I truly thank you all for being there for me. In love and spirit, Sharon

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