Calling all TNs
Comments
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Hello to all,
Done with scan. Thank you all for staying quiet & still in my pocket. Head truly hurting today. Humidity is 62% & hot. I made it through test fine, a little apprehensive but otherwise ok. Closed eyes & during scan did belly breathing, I chanted my ohm in my head. It helped. . I always wear my "no metal" clothes to all my tests & rarely have had to change clothes.
I asked & they said I should have results by latest Friday morning. Now the waiting. The part I truly despise.
Thank you ladies we (Mags, Shari & myself) appreciate the support. Now comes the tick tock time.
Keep you posted.
Marsha
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Wow!!!!
I love my doctors!! My news is already in.
Not Cancer!!! But flip side now a neurologist to figure out cause of my continuous headache. Already ruled out sinusitis. Have appt already for the 23rd with a headache specialist with Univ of Miami hospital. They truly try to help.
Thank you ladies for all the support. It truly makes it easier.
Ok. Now more good news needed from Mags & Shari. Let's go girls. Keep the ball rolling!!
Marsha
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YAHOOOOOOO Marsha! I'm so happy that you got great results and so quickly! I hope your celebrating! Seeing a neurologist is nothing compared to what you've been through! You go girl, I'm really very very happy for you!!
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Wow, Marsha, that was lightening speed fast…yay! And the biggest yay for no cancer!!! I'm with Shari. Keep the news good news coming, ladies! We are all in your pockets!
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Marsha, that is great news!!!I won't say how it was to have my port out as I don't want to scare anyone! But I must add that I had mine for almost 3 years and my body likes to make scar tissue:(
Went to my new primary doc and I really liked her! She thinks the lump that I was worried about is completely normal, but said to keep an eye on it. My mo appointment is in September so I may wait or I might see if I can get in sooner. I haven't been as worried about it. She also is testing me for autoimmune disease. I guess I had most of the pressure points that were sensitive. Can chemo cause an autoimmune disease? I have 2 brothers with Ankylosing Spondylitis and my dad had it and have a sis with RA. Just what I need, another disease! Actually, it would put a name to my misery and make me feel not so crazy! It takes me hours in the morning to feel half way normal, sore and stiff, and then I start to feel pretty good. Anybody here have an autoimmune disease? My fingers are hurting right now as I type, but I thought that was part of my neuropathy.
Hugs to all of you great peeps!!!
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bak good news about the new doc.
I am experiencing the same stiffness, must be chemo related for sure
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Hooray Marsha! Great news on your test!
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Yay! Great news Marsha!
Hugs, lilyrose
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congrats Marsha & sounds like good news for you as well bak!
BanR, that makes me nervous your onc wants you to keep your port for 4 years...
slv58, sending positive thoughts.
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Hi Bak,
I sure have a doozy of an autoimmune disease...MS. I questioned whether my numbness/tingling was from chemo (Taxol) or MS. Now that I am nearing the 3-year mark, I'm pretty sure it is my bad-old buddy, MS.
With your family history, it is good that you are being tested for an autoimmune disease. Some are found to run in families, while others are not so clearly defined.
Both AS and RA are types of arthritis. One of the hallmark symptoms of arthritis is stiffness and soreness in the morning. I have osteoarthritis - the common wear & tear type - and feel the same as you do in the morning. It takes a while to get the kinks out!
And yes, it really is a relief when you finally get a diagnosis, and know you are not crazy. I didn't believe it until it happened to me...something about it NOT just being all in your head.
There is the saying "Get a chronic disease, and you'll live a healthier life". Huh? Well, you are supposedly forced to take better care of yourself, so therefore live healthier. Somedays I believe that, others, not so much.
I don't know that chemo can actually cause an autoimmune disease, but it probably can exacerbate it. My pain threshold has lowered considerably since chemo, and things just hurt more! Of course, I am getting older...
Do you have problems with the damp weather in Seattle? I was stationed at the Naval Air Station on Whidbey Island, and even though the rain ("liquid sunshine") never bothered me then, I just don't think I could handle it now. It would take me all day to get moving!
Glad to hear you really like your new doc. Sounds like she will find the answers and help you to get relief. Quickly, I hope.
Take care ~ Shar
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Marsha, Thank goodness!!! What great news!!
Bac, port for 3 years, Yikes! I'm getting mine out as soon as I can. So happy you like the new doc. Your symptoms do sound like RA. Might be good to see a rheumatologist.
May there be good news for those waiting for results. Thinking of you every day. Hugs.
Paula
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Hi Everyone - Thanks for all your well wishes and prayers. I went for my Breast MRI yesterday and got hooked up to the IV, got put into the machine and within minutes I told them I couldn't do this. I was shaking, felt like I was starting to burn up and just totally freaked out. I should have taken something but not sure it would have helped. Next steps - call to the oncologist to see if they have any magic tricks!!!
For all those with the ports I can't imagine. Having breast cancer twice I have to say I 've never had to deal with a port. Thinking of you and sending good thoughts and vibes.
Slv glad you got through your scan - Mags and Shari hope all is going well and everyone else who is awaiting results.
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My MO wanted me to keep it in for awhile; I asked, "why? do you think the cancer is coming back?" His response was to order it removed! I think he didn't want to give a negative impression. Sure hope I never have to have it installed again.
Nat -
LPBoston, I had an experience similar to you last year when I was diagnosed with BC and had to go in for the first ever breast MRI. I was not able to get through it until I tried it again after taking two 5mg tablets of Valium. That did the trick. I was able to get through it and on with the treatment. I think it gets warm/hot feeling in that particular MRI really quick because of the position they have to put you in and having the breasts in those cups makes it hot. The contrast does not help either. I had the feeling of having a UTI for almost three weeks after that test. I went in to see my PCP to see if I had a UTI and it was negative. The PCP said the contrast dye they use can really irritate the urethra and she has had the same problem. She recommended that I start drinking a lot of water after that and it resolved. This doctor (female) said she had gone through three breast MRIs due to spots on her mammogram and she said it was one of the worst tests she had ever done. Mind you, when I saw her last summer she was eight months pregnant with her fifth child, so she is not a baby.
I wanted to share this in case you decide to try it again. You can do it. I am also very claustrophobic and have backed out of more than one MRI in my many years. I threw up and then cried after one failed attempt to have an MRI on my shoulder back in 2001. I had to have an IV of sedation to get through that one. It made it so easy, but I had to give it a try without it first. They deal with this so often that I am sure your doctor will recommend a way to get the testing done that is needed. I just want you to know you are not alone in trying to get through a MRI test. It is not easy. You have been through a lot with breast cancer and reconstruction. Sometimes our bodies and minds just say enough is enough for today. But I have found it can be amazing when you try again and the correct support is in place it can be done.
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I had my port taken out during my LX surgery. Part of me wanted to keep it, but it was so uncomfortable that now I'm glad it's out. My BS assured me it was no problem to put it in again on the same side if I ever needed it. Obviously, I hope I never will.
Spica, I'm sorry to hear about your MS. That is a doozy of an autoimmune disease! I have a friend with MS that has gone the completely natural route in treating her MS. She writes wonderful blogs about it and I have learned a lot from her. I do many of the things she writes about....juicing etc. I have two autoimmune diseases: asthma and Crohn's disease. They were both actually better during chemo and haven't been bad since chemo finished six months ago. I do eat a much healthier diet these days so that may be helping. I also take tumeric and baby aspirin as anti-inflammatories.
LPBoston....those breast MRI's are hard! I think that was the hardest test I had before treatment.....never again will I do one of those without massive sedation. I was ready to jump off the table too....so I can very much relate to what happened to you. I hope they are able to come up with a solution for you. Let us know if they do.
I had a lump form under my LX scar that I found a couple weeks ago. I gave it 2 weeks to resolve and then contacted my BS at Vanderbilt. They had me come in for a mammo and US yesterday. They are 98% sure the lump is fat necrosis. My surgery was in Feb. 2014. They said I could do a biopsy if I wanted to absolutely rule out cancer. I'm on the fence about it. I have to go back to Vanderbilt in three weeks to see my GI doc, and I might go ahead and have them to a biopsy then. It's a two hour drive each way, so it's a lot easier for me to lump my appointments together. I hate having a breast biopsy almost as much as a breast MRI....my first biopsy REALLY HURT. I looked like I had lost a massive fight, I was so bruised. I tend to trust my doctors at Vanderbilt....they see a lot of breast cancer every day all day long....so I'm going to give myself a couple days to think about whether I want to get a biopsy on this or not. They weren't recommending it, but were willing to do it for my peace of mind.
Wishing everyone a good day!
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I just wanted everyone who is waiting on scans/results that I'm saying many prayers and holding each one of you in thought. I have had many thoughts about mets. It's like I don't even know what's normal anymore! I don't know what a met ache is supposed to feel like, plus I'm like how do they know if my night sweats are just chemopause and extreme anxiety and NOT some sort of mets??!!! How do they know my off and on headaches and pressure are just stress and allergies? Aargh! Cancer sucks!! Anyway hope everyone has a good day. (((((HUGS)))))
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Simplelife,
See if they'll do a needle biopsy instead of a core biopsy. Not nearly as invasive! It doesn't give as much information about cancer type etc if it is cancer, but you don't really care about that...you just want to know if it's cancer!
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Radical, I asked about a needle biopsy yesterday. They said they don't do that. It would be a core biopsy so they could also test for type of cancer. I've had a needle biopsy before years ago, and you are right...they are much easier.
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Simplelife, 98% are great odds! But I would probably go with the biopsy too, just to be safe. From posts I've seen, it sounds like fat necrosis lumps are common.
LPBoston, By all means, get an anti anxiety med like what's been mentioned or Ativan to get you through it. You can do it!
NatL, Yes, if my MO wanted to leave the port in for an extra year or more, I would ask the same question you did! Glad you're getting it out.
Paula
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Unilateral Mastectomy March
April Carboplatin(dose dense) and Taxol for 12 weeks
July A/C dose dense for 8 weeks
September Radiation for 33 sessions
Not sure what my follow up will be . Reconstruction next year ..have TE
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Hi Simplelife,
Isn't it nice that chemo holds many autoimmune diseases at bay, during active treatment? We have to catch a break once in a while! Even though AC/T wiped me out from day 3 -10, it didn't affect my MS, and in fact, my first neurological exam after active treatment showed no progression. Unfortunately, now at almost 3 years out, I am progressing once again. At least MS left me alone so that I could fight BC. They are both divas - fighting for the spotlight! I hope your run with less symptoms keeps going strong. Maybe your immune system has been "rebooted"?!!
A FNA is just a sampling of cells, aspirated from a suspicious area. If the area is more cyst-like, fluid and cells are easier to draw, although there can be necrotic debris that doesn't lend much information. If that area is firm, solid tissue, it is hard to pull much out with a fine needle. That is where a needle core biopsy is a better choice, to get a better sampling. Of course, they do hurt more.
Those crazy breast MRIs. After having about 2 dozen MRIs flat on my back, it was..."you want me to do WHAT???"
Just chiming in here...my MO told me at my last chemo session that I could get rid of my port anytime. As soon as I felt well enough to leave the house and see my surgeon, that doohickey was history!
Sounds like you have a very attentive team at Vanderbilt. Good luck with your decision.
Take care ~ Shar
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Didnt know that about chemo and autoimmune diseases. I'm having the opposite result. I have vitiligo, which is less serious than MS, but it is running rampant the past few months on chemo. My MO said that anecdotally, she find that patients report that it gets worse during chemo.
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wooooo toooo the hooooo for Marsha's good news...this is awesome! Still waiting to hear but keeping myself busy so I just do not think about it.Love and hugs to you all....YOU ARE AMAZING
Mags
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Mags, hang in, waiting for your good news.
Ladies,
Now that the big C worry is gone, I brought up my problem at yoga today. Well, the wealth of knowledge in that group is amazing. A friend asked if she could check my back. I have been doing all the poses with no discomfort (other than normal from the BMX adhesions & port removal area). Well my body has been evidently compensating & my back is a train wreck. The problem is I don't feel it, as dead nerves all around that area. But when she started pushing into muscle WOW pain!! She is the very involved wife of excellent chiropractor in town & very knowledgeable. So that may be cause of my headache. Now have to find a way to get therapeutic massages for adhesions approved by insurance company & get some doctor to order it in correct way so will be approved. What we have to fight for is ridiculous. Anyone ever have any massage therapy approved as part of rehab?? I did not have one minute of rehab. It was surgery, PET scan, port in & chemo. Wham Bamb, not even a thank you ma'am!! Anyone have any ideas or knowledge in this area. Flying blind so far.
Marsha
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Get yourself into that chiropractor!. About 3 years ago I had a terrible muscle spasm along the right side of my spine. I went to see a recommended chiropractor and he treated me on the spot and ordered massage therapy with one of his massage therapists. My insurance covered it. I only saw the chiropractor twice..he said my problem was all muscular and I need massage therapy and NOT chiropractic treatment. I went once a week for a month or so and then once every 2 weeks. I still have a problem with the muscle spasm but it is so much better than when I started. Now I go about once a month. I get what is called a therapeutic massage. And I am a happy lady on the day I get a massage.
Waving hello to everyone. Hoping the time goes fast and the results are good for all those waiting for news. I read often to try and keep up just don't post often
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Marsha,
Navy mom made another point without even realising it. You don't need it billed as a bc related issue. Go to the chiro/massage therapist for back pain and muscle spasms. It may be caused by chest tightness, but the back issue can be treated separately.
By me, there is a pain relief center (chiropractor, physical therapist, massage therapist, omt, and acupuncture all under one roof for one co- pay each visit). I went there when my right arm started going numb 2 yrs ago. They started treating me with massage and chiro-care. It was a month before my muscles listened up enough to feel pain. I understand what you mean about it being so cramped it is numb. Once I was feeling pain, they sent me for an mri. Turned out I have 2 herniated disks in my neck. It's not bad enough for surgery, but I get acupuncture, chiropractic, and massage twice a week now (though I'm on hold and really missing it while doing chemo)
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Meg - so sorry that chemo is stirring up other problems for you. Maybe the chemo affects your immune system so much that the vitiligo is not kept under control? MSers have immune systems in overdrive, so the chemo knocks them down enough to calm the self-attacks. Simplelife's Crohn's disease and asthma seem to react the same way.Sometimes it's all a guessing game, isn't it?
Hope things settle down for you once chemo is over.
Take Care ~ Shar
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Looking, I have been having massage and chiro sessions since
February due to back issues! My insurance would not approve the massage, so I’ve been paying $35.00 almost
weekly for a 30 minute session, I would do it all over again! It is a very painful session, but leaves me with relief! I
actually took this week off just to give myself to get rid of some of the soreness that it causes so I can tell where exactly I am with the back pain and it is MUCH better!Like you, I was told that I would have been receiving therapy during rads, I probably wouldn’t have developed so many problems, but hind sight is 20/20! The MO and RO are only worried about treating the cancer!
Also, the chiro I see actually works on the muscle rather than popping joints!! I love them both and wouldn’t be well today without them!
Also, I noticed, Looking, that you and I were almost dx at the same time, however, I never was given a PET Scan and to this day I wonder why. I’m told it’s because my nodes were clear! But my tumor was very large, so I live with the fear that my back pain is actually mets! But I’ve asked about it and no one seems concerned!
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Nettie,
I was given PET as one node positive & they wanted to find if mets anywhere. PET was negative so no RADS. Had 2 A/C's treatments & had to stop as allergic to chemo. It was a close call for me. Hospital intensive care, isolation. I have no regrets for stopping as know I really didn't have an option.
Unless back pain is traveling & getting worse I don't worry.
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looking forward, which chemo did you have a reaction to? Just curious...I'm on the same treatment plan.
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