Calling all TNs
Comments
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Dorian, I don't have any personal experience with any of the conditions you've mentioned, but I do know about the "dead arm" issue your radiologist mentioned. It is actually called Radiation Induced Brachial Plexopathy (RIBP). There is a thread about RIBP in the Lymphedema forum here (it's a very slow discussion thread because, thankfully, it's a very rare condition), and StepUp-SpeakOut.org has a page devoted to it--how to connect with others with RIBP, management strategies, and abstracts of available research.
It's a difficult condition to deal with, but staying ahead of it can give you the opportunity to manage it well from the beginning. If you find radiation is advised despite the risk, you might ask about starting a regimen of Trental and Vitamin E from the outset. Also, controlling for lymphedema will help to avoid problems developing from the weight of a dependent arm, so a good lymphedema therapist will be a huge benefit. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmGentle hugs,
Binney0 -
Dear KittyKate,
I have just come across your two posts whilst sitting waiting to see my oncologist and I am struck by your courage. I understand your fears regarding your young son, for me it is the hardest part of it all, (i have a son of 8) but this sense of protection for your child will provide you with amazing strength if you need it. It is very sad you lost your mum to BC and I hope very much that you have confidence in the amazing treatment improvements that are changing the BC prognosis - it is great that you have come into a research programme as you will be very closely monitored and will receive, as another lady mentions, state-of-the-art treatment. I can suggest reading Patricia Prijatel's book Surviving TNBC which I understand has lots of positive and useful information (I am a British expat in Bangkok so have not yet located a copy or got around to ordering on Amazon!) - I think it is definitely a book for us TNBC ladies.
Actually, this is the first post I have written - I started my 'journey' in April this year and have thought many times to write but somehow to start writing seemed such a big step. However, your post reminded me of my start and all the feelings that come with this stage. I cut myself off in the beginning and found myself reading forums rather than seeing people. I felt that having to deal with peoples reactions was too much in the beginning and so found these posts really a most amazing support and i thank all the wonderful ladies, and men, who take the time to write. I did however, also take this time to read a lot and became very informed, which I really recommend as it helps to feel involved in your treatment, rather than a passive participant. I also found shaving my hair off to be a positive move - when my hair first started falling out I had major sense of humour failure but this improved immeasurably after I took control and had it shaved off. I wore a wig in the beginning but as I got used to being a 'cancer patient' I found I didn't need it and choose to wear scarves now as they are more comfortable - I just keep the wig for dress up occasions!
I have to go in a minute, but I wish you strength as you start your treatment - glad you have a port, I resisted initially but so glad I have it now. It may be too soon to mention this but looking for humour has helped me the most - we were living in Kuala Lumpur when I was diagnosed but having only recently left Bangkok I missed all the friends I had made there, so my darling husband moved us back!!
Having close friends around you and sharing as much laughter as possible is the best - they can see you bald in bed on bad days or giggling over silly things on good days, a hug for unexpected tears or just good old fashioned retail therapy! Thinking of you. I look forward to getting to know some of you inspirational ladies. Liz x0 -
had my yearly gyn appt yesterday. Day before I noticed a small lump that was not there before on my recon (gap) left breast. Gyn has sent me to my ONC and my PS is recommending a biopsy. My stomach is in knots once again. Need to remember how to breathe
Maggie
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Maggie - Hugs to you. When is the biopsy?
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not sure yet...see ONC tomorrow --thx
Maggie
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Maggie- hope all goes well and it is nothing of concern.
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Binney, thanks for the link to the RIBP thread, and thanks especially for your 2004 posting on that thread about lymphedema and dealing with questions from the curious. I only started having to wear a sleeve and glove full time in January, but when I ordered them I got them in black. I like some of the Lymphediva products but I need a heavier weight sleeve and I'll be danged if I'm going to wear some orthopedic-looking get-up all the time. This way, people aren't sure if it's a medical garment or a fashion statement. Sometimes I tell them more than they want to know, and sometimes I let them think it's fashion. But most of the time I'm just annoyed with the doctors who didn't give me enough information to help me realize what was happening, and what to do about it, before it was too late.
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Hi
,Just popped on to see how everyone is and POW Nan and Al such thoughtless people out there.!! How can they act like that with all you are going through.
Similar but not half as bad here two weeks ago, my three grown up kids and four granddaughters arrived and by the time they left and I had run around like a headless chicken cooking different meals for ten people I was exhausted.
I have vowed that will NEVER happen again, if they want to see me, one family at a time and we eat out !!
My hateful DIL says " last time we saw you, you looked so old and ill " For heavens sake I AM OLD and was ILL. Do they not put brain in gear before opening their big mouths ? The temptation to belt her was overwhelming.
Don't know how you lovely people didn't just throw their things out of the front door followed by the visitors.
If they werent such slobs would suggest you visit them and do the same in their homes. Karma can be wonderful.
Inspired, your experience too was awful, like you I only look at e.mails now and again so would expect the curtesy of a telephone call. I now look after ME and the rest can go swivel. X0 -
Hi - just signed on to pull some data - have to fess up to today that I'm on Metformin. I'm nervous and considering premedicating with Percoset. But then if that screws up the labs, my Metformin may get blamed!
Mags, I'm thinking of you right now! What does your lump feel like - it is similar to the one with your diagnosis? Maybe with the reconstruction and the continued swelling going down from the procedure has made this easier to feel now and it's scar tissue. The body heals and adjusts for a period of time after reconstruction, and reduction in swelling continues for months to com. Someone posted on here just a week or two ago that their lump went away right before the MRI. Let's all stop for a moment and say a prayer for Mags that she too will have the same result.
JenJen! What was the result of him looking at your lump? Your marker story is funny - I like your Doc's response. LOL I used some eyebrow powder to mark the area where I wanted the ultrasound to focus when I went in two weeks ago. We didn't have a marker.
Scouser, that's terrible! What can't people be kind to others?
I've just read the last few posts, will read more soon!
Love you ladies, have a good day everyone!
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Hello to all - just got back from my 3 month appointment with MO - she felt the lymph nodes and breasts for any new lumps and the spine for pain since she said that is a favourite place for breast cancer to settle. No blood tests, scans or anything - she said that all is good - so I guess I should be happy! Oddly enough I don't feel any emotion at all about it. She did say that the anniversary date is from the day they remove the tumour from your body, so that makes me one year cancer free! What a year it has been -- unforgettable. Glad it is all behind me!
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mri and US will be Monday at 11:15 then see Onc again next Thursday...hate the wait!
Yes the lump actually feels just like the one I found those dreadful 2 yrs ago
Maggie
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Oh and Debra...thank you!!!
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Adagio, congrats on the 1 year!
Mags, will be hanging on the edge of my seat until I hear your news. Sending prayers, and my heart just sinks thinking of the day I got the news, and how it's so emotional to have to wait.
Kathrynn, hope things are going well with you.
Naan, you too! Post us a funny update soon and hope your new kitty is bringing you lots of TLC.
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Mags,well crap!! In my thoughts and prayers(((hugs)))
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Hi Ladies
Mags you are in my thoughts and prayers that everything is ok for you. Will be holding your hand. We all know exactly what the waiting can do so know how you feel.
Hoping everyone is coping with side effects and they are not too bad for you.
I read every day but I am so busy with work and now we are moving house in two weeks so lots going on here. Got some lovely weather though so that helps. Have bought a lovely house not far from here up from Taupo's Botanical Gardens and its got a beautiful garden so can't wait to get in and buy some new plants.
Hoping all is going ok for Michelle (LUV). No news lately so that has to be good doesn't it.
Have a great day ladies. Thinking of you all.
Annie0 -
Oh Annie, congrats on your new home, fresh plants sound nice.
I had my quarterly visit with Onc yesterday. I got back the remainder of the lab results today and all is great! Everything checked out fine. I'm going to keep thinking motivational thoughts, working hard and conquering the psyche. Forging ahead!
Much love to you all! Will be checking back in next week to look for your updates Mag - hang in there!0 -
inspired - congrats on your test results all being good. What a relief - keep up the good work. I saw my onc yesterday and unlike you I do not get any tests whatsoever - nada!!! However, she was happy with what she felt, so that is the most I can hope for, I guess. Let's forge ahead together!!0 -
Adagio, that's a deal! Congrats as well to you!
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Hi lovely ladies,
We went for a lovely car ride yesterday to the beach and to a place called Freddy's Ice House - a bar made completely out of ice. Was very cool!! I got a bit frustrated with my scarf so whipped it off in the car - Mr 4 pipes up in the backseat "Mummy, put your scarf on, those boys will laugh at you" pointing to some teenagers walking past - I thought what the heck!!!!! I have no idea where that came from as I've never whipped it off in the car, nice that my little man is looking out for me but sucks that he'll think people will laugh at me!0 -
*pops up like a whack-a-mole. Peers around*
Hi Lovely Ladies!!!!!
Sorry I haven't been here but I've had a personal trip from hell. Mom was in the hospital for a couple weeks in August. No PT so she came home weak (was supposed to go to rehab, but I got a phone call the she was discharged...come pick her up). She fell and tore her rotator cuff. Kept her at home for a week waiting for the VNA to send services. (VNA did an initial eval after 2 days only cause I called bitching, and the nurse called to come see her 7 days later as I was loading her in an ambulance in respiratory distress.)
Mom has spent the whole month of September in the hospital and it's been touch and go several times. She started with severe pneumonia and a urinary tract infection. She then received a triple narcotic overdose for 10 days and spent 2 days basically unconscious. (I kid you not. One of four medication errors I caught). Then a second VRE bladder infection from (and I quote her doctor) being incorrectly cleansed after diarrhea. Infection Put her in psychotic delirium for 5 days.
I've had a hospitalist who had already shown poor judgement on 2 separate occasions, come in and basically give me shit because I wouldn't pull her antibiotics and IV fluids. (My Mom has a primary, this person was just a doctor covering on the weekend)
It was touch and go several times.
Well Mom made it to the Rehab yesterday. She is weak and tired but if she can fight off the last remnants of pneumonia (chance of rebound) and work hard at PT, I hope to bring her home. I know this is a Gift from God, and she won't make it through another bout like this. I'm just grateful for my gift.
*waves Hi to Newbies*
Your in my prayers Mags, I can't believe your news.
*pinches Annie's arse*
Can someone give me an update on any new news on the ladies?0 -
Debra - great news on your checkup.
Maggie - holding my breathe with you. HATE waiting.
My little lump is back. I am just going to watch it now since it seems to pop up and go down, so hoping it is a little cyst. They said it is too small to biopsy. I feel reassurred that I can find something that small on my own. I don't trust mammograms since I have dense breasts. I hope Mag's lump is nothing too. Praying .......0 -
Hello ladies. Just wanted to say that my wife is doing exceptionally well now! Had her bilateral Mx on 9/13. Up and around. Getting stronger every day. Next stop on this train we're on involuntarily is prophylactic oophorectomy on 11/6. PS would like to do exchange surgery after that sometime. Stop this surgery train we wanna get off!0 -
You're more than 2/3 way through!0 -
Good morning ladies. I received a message from Laurie08 on the cooking thread that Michelle (LUV) frequents:
Michelle is struggling. She is unable to walk or care for herself any longer. She does not speak much anymore and spends a great deal of time sleeping. All treatment has stopped from what I am told.
Her decline is happening very quickly. This is so heartbreaking.
I can't believe this is happening, so fast. My heart is breaking. I wish LUV much peace and comfort and her family the strength to see her through this incredibly difficult time.
Thanks to Laurie for letting us know.0 -
This news makes me so sad. Hugs to LUV and her family. Praying for peace and comfort.0
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Michelle, I'm keeping you close in my heart.0 -
TifJ - Thanks for providing the update on LUV. Such sad news. I'm so sorry to hear of her struggles, for her sake and her family's. Will keep them all in my prayers.
We all need to take a lesson from Michelle. She enjoys life every chance she gets. I need to continue to improve on my "living in the moment" skills. Good life lesson for us all.
Kathy0 -
So sadden to hear the news of LUV. Prayers to Michelle and her loved ones, I hope she is comforted knowing how much she means to all of us and how much she is loved!0 -
Love to you and your family Michelle0 -
So heart breaking the news about LUV. So sad for her family. I wish her peace, love and comfort and hope she suffers no more. Such a gorgeous, fun and very wise and caring lady.0
