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Grateful for today 
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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 Posted: Dec 31 2011 at 11:34am |
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HI Becky,
You mentioned you are more tired this past week........... you had your port placed, you had the efforts to get the Vit D test, and you are dealing with the passing of your son's friend.....that's a lot to deal with. To be on the safe side , you may want to inform your physician of your serious tiredness. I did not have a port for chemo. So, will leave port comments to others. You seem to be keeping your primary care MD informed of what's happening. You may want to consider updating your primary care MD on the port experience. Another thought, what do you think about another PT consult. If PT knows the location of your port then PT could re-assess the current PT plan for what you are doing to drain the fluid from your chest? Vitamin D level. If for whatever reason, the vitamin D test was not done by your oncology MD. Some members have had the Vit D test done by their primary MD. Just a thought. With caring thoughts, Grateful for today.................Judy P.S: Let's see what others who have had ports may post. |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Dec 31 2011 at 11:43am |
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Hi Becky,
I'm so sorry you are having problems from the Port surgery. I was really sore for about a week afterwards, but did not have any bruising like you're experiencing. They gave me pain meds, percocet I think. If you're still experiencing pain, can you call and ask for some? Have you tried Ibuprofen (Advil) to see if it helps? I'm sorry you're also having problems getting a Vitamin D test. It's just a simple blood test and I don't understand why they don't do it. Once I requested it, it's part of my routine blood work. Now that mine is in the optimal level, I test every 6 to 12 months. You can order an in-home Vitamin D test from http://www.vitamindcouncil.org/ but have to pay for it out of the pocket. I never used a numbing cream for the area of my port. It never hurt when they accessed the port. The chemo nurses would always tell me to take a deep breath and then they'd access it. I never felt anything. Wishing you the best, Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Becky D
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Joined: Dec 07 2011 Location: Illinois Status: Offline Points: 79 |
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Posted: Dec 31 2011 at 7:36pm |
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Hi Judy,
The only problem I have with contacting anyone in the medical field is that the offices are closed until Tuesday. I plan on filling the surgeon and my primary in. Thursday I should know if the vit d test was done, if not, I'll notify my primary after I get home that afternoon. He's not afraid of stepping on toes and having tests done or redone. Hugs, Becky
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DX 10/25/2011 TNIDC
B,MRI,G,PET BM 11/25/2011 T-2.5cm N 1/8-3.9cm Stage 2b/3 Grade 3 |
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Becky D
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Joined: Dec 07 2011 Location: Illinois Status: Offline Points: 79 |
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Posted: Dec 31 2011 at 7:50pm |
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Hi Donna,
I was specifically told I could not take Ibuprofen, Naproxin, aspirin - only tylenol. It was reitterrated in the chemo glass and my friend Juli told her Tylenol does nothing for me. The nurse raised an eyebrow and told her it was all I can take and moved on. I can call the PT Tuesday and let know the tube is in the way, but I can't go in and see her again without a referral from one of the doctors and don't see them until Thursday. I'll try wearing the compression shirts more, but even though they are tank tops, I can't wear the strap of the right side up on the shoulder. It causes the top of the shirt to rub the port area. I just feel like such a whiner and I'm normally very tollorant. I just hope the chemo goes smoothly and fast. Hugs, Becky |
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DX 10/25/2011 TNIDC
B,MRI,G,PET BM 11/25/2011 T-2.5cm N 1/8-3.9cm Stage 2b/3 Grade 3 |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Dec 31 2011 at 7:55pm |
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Hi Becky,
You are right.....most offices are closed until Tuesday except for the on-call person for urgent matters or emergencies. Am sure you are following the instructions and info on the discharge info sheet from the port insertion. Hopefully things are settling down and you won't need to call the on-call person...... but if you do, that's what the on-call person is there for. You have a good vitamin D plan as you posted above. Thinking and praying for you and your son and the family of your son's friend. Lots of hopes and prayers for you and your family for a better 2012. Grateful for today...........judy |
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Shelly Rae
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Joined: Apr 25 2009 Location: US Status: Offline Points: 318 |
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Posted: Dec 31 2011 at 9:51pm |
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Becky I also had black and blue marks after the port was put in, but no pain. I had the cream for chemo, but most of the time forgot to put it on 1 hour before chemo so I didn't use anything and it wasn't that bad to take the poke. Good nurses poke you fast so it doesn't hurt much. I have heard that there is a freeze spray that works well to numb the port area. You might want to look into that if you have a problem with pain. Please try to find the good in each day. One of my kids once sad about a crabby person, "Mom maybe her underwear are on too tight". Just think of that when you encounter the next crabby nurse. LOL I was the same stage and grade as you.
Shelly Rae
Edited by Shelly Rae - Jan 01 2012 at 3:59pm |
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4/09 age 47 Stage 3a, Gr 3,1 node micro ACx4 Tx4 Rads x 33, done Dec.1,2009 NED
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Jan 01 2012 at 1:07am |
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I had a port placed, hate to share my experience but it seems you didn't have mine. Thank goodness!!!!! First off bruising and sore shoulder continued for about a week. No lingering tiredness. My question would be to you....were you out cold for the placement under anastesia? I wasn't ,maybe thats why not tired.
Now my experience...The vascular surgeon that placed my port in his office surgical suite punctured my lun g. A very harrowing situation with many phones calls trying to find out if the shoulder blade pain and a bit of shortness of breath were normal, not the doc or nurse prac came to the phone. Shortness of breath got worse. Wound up in emergency room with 50% collapse and a chest tube being placed. Best wishes for you feeling better soon, Nat
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jan 01 2012 at 11:32am |
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Hi Becky,
Know without a doubt.......you are not a whiner. ( Even if you were, that's OK, there are times we just need to respect where we are in life.) Think you are doing exceptionally well given all the things that have happened since your diagnosis. Joining you in your hopes that chemo goes smoothly and quickly. Again, did not have a port. These are just some thoughts you may like to consider. Am hoping some one else who had a port and also had used compressions top tanks will post. When you mentioned you were trying to wear the compression tank top more, the thought occurred to me.......wonder what is the instruction advice given for immediately following port placement and wearing compression tank top. If wearing the compression tank top is too uncomfortable, would you consider calling tomorrow (even though you would have to call the on-call person) about the use of the compression tank top immediately post port placement? If the tank top is not uncomfortable and there were no specific instructions post port use, you still may like to consider calling your physician (? which one...? surgeon) on Tuesday. Please remember you know your situation best and do what you think best. Sometimes I think things can change from the time some one posts and when some one else replies. With lots of caring and hopeful thoughts, Grateful for today................Judy P.S: Let's see what others might post about post port placement and compression tank top use. |
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BamaRachel
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Joined: Sep 23 2011 Location: Alabama Status: Offline Points: 164 |
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Posted: Jan 01 2012 at 9:24pm |
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Becky, I have a port, and recovering from that surgery was worse than my lumpectomy/partial mastectomy. The pain was definitely worse, and I also had extensive bruising all over my chest/breast area. I actually called my surgeon's office and talked to her nurse who told me that the doctor had a difficult time "placing" the port because of my anatomy. Go figure. Not sure what she meant by that. But after about a week the pain subsided, and it's no big deal now. The only issue I have is that apparently my port is what the nurses describe as "positional." When the chemo nurses try to flush the port, I have to raise my arm over my head so that the port will flush properly. The nurses use a freeze spray prior to accessing my port, which works wonderful. Only thing I feel is just a little bit of pressure. On Tuesday I'm having my 8th, and final, chemo treatment and assume I'll be getting my port out soon. Good luck with your chemo treatments.
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DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Becky D
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Joined: Dec 07 2011 Location: Illinois Status: Offline Points: 79 |
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Posted: Jan 02 2012 at 11:45am |
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Hi,
The only instructions I was given was not to take baths or let the sight soak in water. I could shower. The rest was standard, teeth chattering chills, severe redness with fever, call. Yesterday, I couldn't get the compression tank on at all. Anything that caused my shoulder to move inward toward the port hurt like hell. Accidentially bumping it causes intense pain. I got into it today, but can't wear the strap on my shoulder as it causes the top to rub the sore area. The bruising has turned red, but not infection type red or any wqrmer than the rest of skin. I've never seen bruising go red before, normally yellow. The swelling has started to go down. I can see one of the bumps of the port now. I can swallow with out pain now, but I still can't yawn or move my head without pain, even belching hurts. I guess overall its getting better although the hasn't lessoned all that much. I'll live. Last night I walked out into the kitchen topless. I was fixing a half sandwich and the boys came out from the living room. "Mom, that's just weird." They weren't offended or anything, but yeah, I can see it's wierdness that I can now walk around topless. Jesse asked why I have to do chemo if they removed the tumors. So we had a discussion about how removing tumors doesn't mean they got all the cancer. Cells can escape and that's what they want to kill off. Jesse was in such denial at first and wouldn't talk about or ask questions, so I'm glad now he's feeling comfortable about asking. I guess I should take the hint and get dressed for shopping. My husband is bored and wanting to get out. Hugs, Becky |
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DX 10/25/2011 TNIDC
B,MRI,G,PET BM 11/25/2011 T-2.5cm N 1/8-3.9cm Stage 2b/3 Grade 3 |
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lisadi1963
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Joined: Dec 26 2011 Location: Topeka, Kansas Status: Offline Points: 8 |
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Posted: Jan 02 2012 at 11:31pm |
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Hi Becky,
I'm recently diagnoised 12/15/11. I am stage 2A and TN. Waiting for BRCA test to come back. It should come back tomorrow or Wednesday. I have 4 girls - 26,23,18 and 17. The two older ones have been asking lots of questions, but the two younger ones don't really want to talk about it. I don't press the issue. They will ask questions when they are ready. It's really been a crappy year all the way around. I was recently divorced to their step-dad in July and then a month later my Mother passed away. I thought things were going to get better once I bought my own townhome, but I was wrong. Boy was I wrong!!! I have my ups and downs for sure. Trying to be strong for everyone. Once I get the results of the BRCA and hopefully it will come back negative. If that's the case then I need to decide if I want a lumpectomy or just take the breast. But with my luck it will be positive and that will make the decision for me. Reading all these discussions is helping a lot. There's just so much information to take in right now. So many decisions to make. Best of luck with everything you are going through. Lisa
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rigatonismom
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Joined: Sep 22 2010 Location: Albuquerque, NM Status: Offline Points: 266 |
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Posted: Jan 03 2012 at 7:33am |
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Hi Lisa,
Sorry you are having to deal with all of this all at one time. One thing is hard enough. Where you are is probably the hardest in this journey. At least it was for me. Once you have a treatment plan and you get started, things will probably settle down a little bit. Come to this board as often as you need to. You can rant or cry or yell or do what you need to here. There is usually someone around who is more than willing to respond in a caring and compassionate way. Nita
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DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Becky D
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Joined: Dec 07 2011 Location: Illinois Status: Offline Points: 79 |
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Posted: Jan 03 2012 at 6:50pm |
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Wow! Lisa, I can't imagine dealing with all that and now cancer.
Makes my whining seem petty. Still, I wish I had a new team. I found a new lump and it's doubled in size in 24 hours - hard and non-mobile above my armpit where I've already had nodes removed. Who do I call? I didn't know so my husband told me to call my liason at cancer center where I started. She told me to call the surgeon and said to let them know about the lump and see if they want to do anything before I see the surgeon on Thursday and to make sure they know I'm scheduled for my first chemo treatment just before that appointment, but said it's probably fluid from my arm, especially since I had been seeing a lymphedema physical therapist. I was seeing her for fliud buildup in my chest, my arm is just fine. So I call the surgeons office, leave a detailed message and two hours later get a call back "What's the problem, explain it to me?" I take a deep breath and explain it to her and asked her if I should still have the chemo. She says she'll talk to the surgeon and see if she wants to do a sonogram before I see her. She calls me back and says the surgeon is with a new patient (which is always the excuse) and says she talked to the assistant who says no tests are to be done before my appointment on Thursday - nothing was said about the chemo. I'm not happy at all. The assistant is inept to say the least. I have an appointment with the oncologist before chemo on Thursday, so I'm going to see what she says. I don't want chemo until I know what this lump is for sure. We've just returned from Josh's vistation. Rough to say the least. Hugs, Becky
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DX 10/25/2011 TNIDC
B,MRI,G,PET BM 11/25/2011 T-2.5cm N 1/8-3.9cm Stage 2b/3 Grade 3 |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 03 2012 at 7:46pm |
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Becky,
Your heart must be very heavy after Josh's visitation. It's such a hard time right now and your family must be feeling his loss and the unfairness of it all. I have no words, just sadness. I'm sorry the medical team isn't responding to your concerns with the new lump. Maybe when you visit your onc, she can get on the situation right away and have it looked at. Have you thought about getting a second opinion? Maybe at a larger cancer facility associated with a teaching hospital. Knowing what I know now, I wish I would have sought a second opinion at the beginning of my diagnosis. Wishing you the best and hope you get answers to the new lump quickly. Maybe they can to an ultrasound on it. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jan 03 2012 at 7:59pm |
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Hi Becky,
The loss of a son's good friend is difficult at any time..........to have all the sorrow and feelings that such a loss brings at this time in your life.......I cannot imagine how you are doing it.... can only send caring thoughts and prayers to you and your family and Josh's family. Donna's ideas about having your medical oncologist get on the situation when you visit and thinking about a second opinion sound very reasonable to consider. Know you have been keeping your primary MD informed. Maybe your primary MD might have some thoughts after learning of the response you received when you called about the new lump. With hopeful and caring thoughts, Grateful for today..............Judy |
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lisadi1963
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Joined: Dec 26 2011 Location: Topeka, Kansas Status: Offline Points: 8 |
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Posted: Jan 03 2012 at 8:51pm |
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Becky,
Noone's situation on this discussion board is petty!! Like Nita said this is a place to vent, whine, find compassion when maybe the day didn't bring anything good. It seems like this is a great place to find answers and just talk to people who are in the same situation and understand what you are feeling and going through. I can't believe your surgeon is being so nonchalant. I might have gone downto the office and thrown a big hissy fit  . Lots of love coming your way. Lisa
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Becky D
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Joined: Dec 07 2011 Location: Illinois Status: Offline Points: 79 |
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Posted: Jan 04 2012 at 10:51am |
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Lisa, once I was turned over to the surgeon everything went downhill. The care I got up to that point was top notch. People were caring, they'd hug you, hold your hand, actually talk to you. Now, I get none of that. Everyone from the surgeon to the oncologist to the lab techs are hard, cold, uncaring, and unfriendly. They make me feel like I'm inconviencing them so they do the bare minimum and rush out as fast as they can.
Despite the fact that the surgeon is this way, it's her staff I take real issue with. They are the most incompetent people I'm come across aside from my boss. She knows of no vistits I've had with her nurse or assistant unless I tell her and the look on her face says it all. She knows they are incompetent. She asks for names of everyone I saw. At this stage of things, I don't know how to go about getting second opinions or changing to someone who actually cares. I'm hoping the oncologist steps up. If she doesn't and the surgeon doesn't, I won't have a choice but to take it and dump it in my primary's lap. Maybe he can guide me from there. Or it's possible, I can go back upstairs and sit down with my liason and who boss and lay it out and enlist their help. In the meantime, A headache came on last night and it's a doozy. It kept me up most of the night despite the sleeping pill. No better this morning. And now, I have to deal with the insurance company. They called my husband and refused to talk to him about whatever, they need to speak to me. She wouldn't even take my number from him, he had to call me and have me call her. Now, I'm waiting for her to call me back. If it's not one thing it's another. Hugs, Becky |
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DX 10/25/2011 TNIDC
B,MRI,G,PET BM 11/25/2011 T-2.5cm N 1/8-3.9cm Stage 2b/3 Grade 3 |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 04 2012 at 11:13am |
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Becky,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">
Can you tell us where you live in Illinois (north, south, east, west area)? Maybe some members can offer some suggestions for changing care. Also there are several very good NCCN institutions you could go to for a second opinion. Steve has many contacts and could help you with an appointment if you decide you'd like to go that route. Wishing you the best, Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Becky D
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Joined: Dec 07 2011 Location: Illinois Status: Offline Points: 79 |
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Posted: Jan 04 2012 at 1:24pm |
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I'm in central Illinois - Peoria area.
The call I had to make to the insurance company was all very good. It was actually one of their oncologists, Lesli Glaser, who is now my advocate and source of help and information. We had a wonderful conversation. She's willing to make the calls for me so I don't have to deal with the brushoffs and attitudes of people. She wanted to call the oncologists office for me, but I opted to do it. I should have had her do it. I swear. The receptionist who answered wouldn't put me through to my doctors office until I told her why I was calling and she wouldn't let it go at that I had a couple of questions. Then she puts me through and I had to leave a voice mail and was told my call would be returned within an hour. I left the room to go wash up the crock pot from last night and missed her call back. So, I called back and had to go through the same issue with the receptionist. I finally get to talk to someone and she's all kinds of rude like I interrupted her favorite tv show or something. I asked about the numbing cream I was supposed to be given and hadn't. She said they'd call my pharmacy and order it. I told her about the new lump and her whole attitude changed for the better. I'm waiting on a call back about whether or not they want to put off chemo until the surgeron looks at it. The concern Lesli had was that if the surgeon needed to do anything, my whilte blood cells could be too messed up. Let's hope things get better now. Hugs, Becky
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DX 10/25/2011 TNIDC
B,MRI,G,PET BM 11/25/2011 T-2.5cm N 1/8-3.9cm Stage 2b/3 Grade 3 |
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Becky D
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Joined: Dec 07 2011 Location: Illinois Status: Offline Points: 79 |
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Posted: Jan 04 2012 at 7:07pm |
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The oncologist's nurse calle me and said I can either cancel my morning appointments and see the surgeon as scheduled or allow the oncologist look at the lump and weigh in and talk to the surgeon about the next step. It's sounding like I may not have chemo tomorrow.
My hsuband was across the street from where I work getting gas and he was called over to the place by his friend who also works there. They wanted him to collect the money from the donation canister, but my boss told him to let me know that he's having trouble setting up the computer access so I can work from home. And he also sent dinner home for us. I'll be able to drive now, I hope, now that I have the numbing cream. I know it's for the chemo, but it might allow me to drive more safely. I drove my daughter-in-laws care back from the funeral home yesterday, since my son showed up and she was going to ride home with him. I couldn't turn my head to check the blind spots without intense pain. It pulled on the port area. I'm feeling a little less stressed right now, but the headache is still there. It has to be weather related. We're having crazy weather. It was freezing the last couple of days, but warmed up over night. The barametric pressure must have changed with it. It almost reached 50 today after being in the teens and twenty's. Supposed to be in the 50's the next few days. Hugs, Becky
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DX 10/25/2011 TNIDC
B,MRI,G,PET BM 11/25/2011 T-2.5cm N 1/8-3.9cm Stage 2b/3 Grade 3 |
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