Calling all TNs
Comments
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Hi Everyone,
I read this site often, but haven't posted in a long time. I was wondering if any of you could tell me how much you keep in touch with your onc?
Things have not been going well with me and I am quite upset over the poor response I am getting from my Onc and his nurse. I do not call with every ache and pain, but did call this morning about significant joint pain. The response I got was that perhaps I should be addressing this with my primary physician, however she said she would talk to the Onc about the pain meds.
I also had my reconstructive surgery cancelled due to low platelets and wbc's. The nurse tells me the onc knows about this and is not concerned about the low levels (not at a dangerous level) however it is lower than when i was taking my last taxol treatments (in August) So I ask the nurse if this is common, and she says she can't answer that. All I was looking for was an explanation for this.
I don't know, am I expecting too much? I read from someones post that her Doc wants to know about all pain and changes...and furthermore don't I deserve an explanation for the low platelets and wbc's? I am frustated and feel like I am being blown off.0 -
Lori I have an MO that sounds just like yours! I look forward to responses to your questions. Best of luck.
Grateful I found this site years ago. J0 -
Hi all,
I'm new to this thread. I was diagnosed in late July and am getting neoadjuvant chemo right now. I seem to be doing it backward than most people with TNBC. I'm getting weekly taxol first times 12 (I'm on week 9 right now), then AC. After that, it's onto surgery and radiation. TNBC scares me. I'm glad there is a special thread for us.
I'm doing great with the taxol so far. I even still have my hair, but I'm thinking that will be gone next month when I start AC. I just wanted to connect up with other TNBC gals....thus, the post!0 -
Jan-so your mo brushes your complaints off, and doesn't see the need to explain things? I did get a response from another gal on a different thread, and she said she goes to her primary for everything.....I just thought I was to work closely to the M.O....if working with the primary is the way to go, it would be nice to know that from the onc....
Seems difficult to navigate this journey "the right way" and not inconvenience the M.O...0 -
Yes, Lori, let's not inconvenience our MOs! I took a nice list of questions/concerns to my last 3 month check up. He bluntly said each of them were PCP questions. OK, perhaps so, but he could have acknowledged me as a person with concerns. I have the feeling that when a patient is NED, he isn't all that interested. (I came to this MO after all treatments were completed.) Communication by phone is passed both ways by some office person who is not a nurse. My PCP is wonderful in person and by phone. He also has a wonderful email-type of service that we "talk" about my issues. Sorry you have to deal with these frustrations, too.
Annie, I hope you have a wonderful time at your cake convention. Sounds absolutely delightful!
Jan0 -
Lori/Jan, The way my wife's Onc expressed it was "after chemo, you and I will get married for 5 years. I will be your 'cancer husband' and I want to know about everything, no matter how insignificant it may seem to you" He said it right in front of me in a very appropriate, not offensive way. That said, we have never even once felt like he was dismissive or that we were annoying him. I have my issues with the Cancer Center that employs him...but not the doctor himself.0 -
I just returned from my appointment with my SO. My SNB was on Oct 30, she took 3 nodes and they came all negative!!! I feel so blessed. Thank you all here listening to me when I was so nervous!0 -
Jianchi GREAT GREAT GREAT NEWS!!!!!! So happy for you! You ARE blessed and you're going to be just fine!0 -
ALH I want your wife's MO. It would be so comforting to have someone so in tune with me. I'm going to talk this over with my PCP when I see him in 2 weeks. Best wishes to you and your wife. I admire your continued posting on this thread.
Jianchi Wonderful news! Celebrate........
Joy to all, j0 -
Thank you Alhusband and Jan, I am having the best day since my diagnose of BC. Hope everybody's treatment goes well here!0 -
I have to say that all of my Dr.s have been absolutely wonderful! they take their time to answer any questions I may have. The down side is sometimes the wait time at appt goes a little longer than I would prefer. but I would rather wait a little longer and get my questions answered.
In my area of the country, there is a big push to mesh medical care with holistic care. Treat mind, body , and soul. My BS gives out certificates to use with massage, acupuncture , reiki, and numerous other calming methods. Both of mu MO's have always answered questions and hug me at the end of my visits. My RO actually called me from her home to talk to me after learning of my recurrence. If you are not comfortable with your relationship with your dr.s, you may want to consider a 2nd opinion and see how that dr handles personal interaction.0 -
This is the latest sad update on Michelle (LuvRVing) that was posted on another thread this afternoon:
Just wanted to make a quick trip here to give you an update on our Michelle. I was with her last night and she is not doing well. She can't speak but I did ask if she could hear me and she did respond with a "yes". She can't put any words together. Rick just called about an hour ago and she was unresponsive this morning. They called Hospice and they were able to have her come around. Hospice feels her kidneys are now shutting down and they are waiting for a bed at our local Hospice.....they feel it may be just a few days.......I hope to get back to her tomorrow....I will let you know......This is so sad and not the way she should have to leave us after all the brave fighting she did....love, Joyce
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Michelle, I pray you find your peace. This is just so sad, my tears are flowing . You have made an impact on many people, your legacy will live on. Prayers to you.
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All my best to Michelle. Even if I do not know her, I feel so sad that this nasty disease can take over people's health like this...0 -
Jianchi- WOO HOO! That is great news!0 -
TifJ, thank you so so much! I am so so grateful for my good results!0 -
wow Jan...what a prick...geez I should count my blessings. I think I would of blown my top if a Dr. talked to me like that. I actually had a young Dr. called a fellow. (I always thought new Docs were interns) anyway she talked down to me, and after the visit I told the office manager I wanted her off of my case. She relayed it to my M.O; he didn't call me about it, which is fine. The next appt., she was not there.
Slowlori/al- that is soo cool that you have such caring Dr.s...how awsome to not only have a smart Dr. but a truely caring one to boot. Kindness goes a long way in my book, and then to get a hug....cool cool cool
I did get some answers today, the onc wants me to see a Rheumatologist, as the symptoms I am describing sounds like it could be R.A. I also tactfully brought up the whole issue of referring me to Primary Physician, and said I was uncertain about who I am suppose to call when I have problems...she changed her tune and said it was fine to call the onc, and I should continue to call the triage line. Overall she was very nice, which is a switch from sounding abrupt and annoyed in the initial conversation.
I appreciate your help, and now I know that I am not expecting too much. I am thankful that I could vent on here, and get my thoughts together before I talked to the nurse again. I don't think it would of been good to blow a gasket to her....Have a good night. Jianchi....CONGRATS
...so so happy for you...... Lori0 -
Lori, thank you so much! ! I am happy for you that you are having good conversation with your oncologist. So far I have only met my MO once. My SO is wonderful!0 -
Jianchi...happy dancing for you....thank you for sharing the good news with us all!
Mags0 -
mags, thank you!!! Today is my lucky day since I was diagnosed!0 -
simplelife - welcome to the thread. You will find lots of help and support from the ladies here. It is a good place to come and ask questions and just feel like you belong. There are lots of TNs around, and most of us are doing fine.0 -
I was wondering how many of you sleep in total darkness. "they" say that sleeping with a light on can lead to cancer..............just wondering since there is a lot of cancer in my house. Checked for radon and etc.......so thought I would ask and see what others thought0 -
Jianchi... yay0 -
I'm having one of those nights....tired but just can't sleep. This thread is busy, busy, busy. Trying to catch up. Lots of new names here. Wanted to say good luck to all the new ladies. Hang in there and lean on us whenever you need to. When you are having a bad day and are feeling afraid, remember that we are with you in spirit. And please share good stuff, too. We all love doing saying a loud WOOT WOOT!! and doing a little happy dance!
I am so sad to hear about this next turn for our dear Michelle. Praying for her comfort.
Once again I am reminded how much I hate cancer.
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Stupidboob, I don't sleep in total darkness, but wish that I did. I sometimes use an eye mask to block out all the light, but those can get hot. I like total darkness because it improves sleep quality. I feel like one of the best things I can do for myself in fighting cancer is to get enough sleep and it's one of the things I have the biggest difficulty with.0 -
Simplelife: AMEN to that! I got a whopping 3 hours last night. Too many hot flashes and just couldn't turn my brain off. Gonna be a long day. I have never been a "good" sleeper and it just gets worse as I get older.
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Hello dear ladies and ALHusband,
It has been a while since I have posted. I finished all my treatments in July and just had to take a break for a while to try to get back to a normal life -- however, I did not forget about all of you and thought of you. I decided it was time to catch up, and what a lot of catching up I had to do. This thread is very active and it took a while to get through three months of posts but I finally did it. I was so shocked about Naan and praying for Michelle and her family.
To all the new ladies -- so sorry you have to be here, but this is a wonderful forum. It was a lifeline for me. I found so much information and comfort here while I was going through my treatment. You might also see if there is a chemo group started for about the time you are having chemo (or start one if there is not). That is very helpful too -- people going through the same thing you are at the same time.
An update -- my hair is a little over three inches now and salt & pepper in color -- still trying to get used to the color (decided I'm not coloring anymore), but liking the length. I lost my eyelashes a second time about 6 weeks ago, but not really totally -- little short ones pushed out all the longer ones so I still had lashes; they were just stubby once again. They are back to the point they were before again, so I hope it doesn't happen again! Someone mentioned hair growth slowing down. My hair grew really fast for a while and was having to shave my legs every day -- now I can go a week or more. October 11 was ONE YEAR from my surgery. My MO said to count from surgery date. However, my husband said if they considered you free from cancer after the surgery why did you have to go through all the treatment crap? I said that was in case there were any micro cells of cancer they couldn't detect, so he says, exactly -- they don't know. So he thinks it should be counted from the end of treatment. So, I think I will consider my surgery date the day I began my fight, and the end of treatment, the victory day.
I have not really felt well since I finished radiation in July. Every day is different -- flu-like symptoms, muscle aches, bone aches, tightness in my chest, soreness, etc. When I told my MO about it at my August visit, he said it sounded like fibromyalgia to him, but he did some tests to rule out other things (lupus, thyroid, arthritis). He said he would call if any came back positive. I didn't hear anything so assumed all was negative, but I continued to feel crappy every day. After several more weeks, I tried calling his office and just kept getting the run around from staff. After several calls, I finally got across to someone that I was in pain and needed the doctor or someone to call me back. The nurse finally called and said that they were going to send me to a rheumatologist since all the tests came back negative. I had that appointment on Monday and he thinks it is chronic fatigue syndrome. He gave me some medications but said that it would probably take several weeks more before they helped. He said my body had been through a lot and unfortunately treatments did have some negative side effects. I really don't like being on medications. I had already started paying more attention to my diet and eating more greens, fruits, etc. I got a NutriBlast machine, and I really feel that is slowly helping. Anyone else have these issues?
I'm taking my granddaughter to Build-A-Bear today for her birthday present. She is 10, but that is still her favorite thing to do for her birthday. I hope it will help her get over her trauma of yesterday. I picked her up at school and took her home to get clothes for spending the night. She went in her room and ran out crying hysterically. It took a few minutes for me to calm her enough to find out what happened -- one of her pet mice was dead and the other one was eating it. Luckily, her 14 year old brother was there and took care of the mouse situation, while I held her and let her cry it out. Then we called her mama and let her talk to her. I think what she saw is going to be hard for her to get out of her head. She was still upset about it when she went to bed.
Sorry for such a long post. I hope everyone has a great weekend.0 -
Hello Sisters,
I'm on my way to go see Michelle. I hope again that the group again won't mind if I include and speak for them.
I made a message for Michelle's wall from all of us.
I had to scan thru quickly to list names, so people I missed.....please forgive me. I added this message at the bottom
"And MANY, MANY,MANY more that aren't listed and those who have passed from our lives in this journey.
Your online SISTERS want you to know how grateful we are for your love and friendship. You have made such a positive difference in so many lives. We want you to know that we are holding you and your family close in our hearts. We wish you peace and joy Michelle
Love
The SISTERS of TNS
I'll check back when I return
*blows kisses*
Kayak2 - I just noticed I missed you on the list and added it in.....everyone else please forgive if I missed you
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beautiful Kathy and thank you for including us0 -
Kathy, Thank you for your beautiful and most thoughtful gesture for Michelle.0
