Calling all TNs
Comments
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There is so much good information shared here!!! And so nice to see so many familiar names and faces!
Will you share your thoughts/experience with me on this? 3 years to the day of my original dx,(3/24) my onc calls to say the mri I had Friday showed a sclerotic lesion on my pelvis and to have a new nuclear whole body bone scan asap. I'm on standby after my ins approves.
I have been in constant whole body pain since the chemo as well as a 6 yr history of left flank/back pain and tried every treatment available including back surgery to no avail. My left pelvic area has been on fire/cramping with hi thigh bone and leg pain for 2 months. I was ignoring it because I'm achy all the time. But now I can't sleep or lie on that side and pain increased, thus the x-ray and ensuing mri. Interestingly enough, my blood work was good and tumor marker at 5.
Here's my concern. If its bone cancer, I'm looking at a lot of pain! ugh. I won't have any more treatment as chemo was pure poison to me. If its NOT C, then I"m looking at endless years of pain as the doctors shake their heads and say, we don't know the cause. I am not sure insurance will pay for anything at this point cuz its pre-existing and I had a lapse in ins.
What if they say, lets biopsy it? ouch!!! Its in the ilium, the lower pelvic bone. And then what if the pain persists? I am seeing this as a lose/lose proposition. How can I hope to have this new pain resolved when a solid year of trying to tend to it with physical therapy/chiro/injections/meds/walking/ice, you name it, I've tried it. Hundreds of $$$$$. Where my legs hook into my torso is bad.
I feel like I'm in a house with a person with a gun and they can come out any time and shoot me. That would be a new C diagnosis. We know it can happen and it makes it that much scarier. Or will I continue to live like an invalid? If you have ideas or experience, pleasel let me know...I've probably already tried it, but am open. This week has been excruciatingly anxious. Where is the bright side? Do I miss work on 'report' day so I"m not blindsided like I was 3 yrs ago and freak out? I don't want to be alone when this unfolds but no family nearby. I think I need another xanax!!!!!!!!!!!!!!!!!!!!!
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Ruth: I can't help much except to say I'm sorry for what you're going through. I think many of us have had scares since Dx and the waiting is the worst part. And to some extent I think we will always live in fear of the other shoe dropping... the further out we get the better it is, but it only takes a suspicious ache or irregular scan to throw us back into that paralyzing terror. Hope your result is benign, and they can do something for your pain.
Michelle: Thanks for posting the links. It sure would be great if they can replicate the results they saw in mice in humans.
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Ruth,
I am very sorry you are going through this horrible time - it seems like with your six year history of pain there this may be related to something that was there before the BC. I just hope whatever it is can be resolved and your insurance will pay.
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I'm headed to work and just wanted to answer Inmate - I had TAC x 6 for my first chemo. It was every 3 weeks, two of the cycles were with epirubicin instead of adriamycin due to the shortage of A at the time.
I've got lots of reading to do this weekend to catch up!
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CharB - big congrats on finishing chemo! It's a great feeling, isn't it?
Inmate - I'm glad to hear your're doiing OK. May the Halaven continue to treat you gently.....while it kicks the crap out of the cancer!
Lovelyface - It's wonderful to find a doc who truly listens. I hope he will figure out the cause of your lethargy and help you get back to feeling like yourself again.
Ruth - Sorry you're going through such a horrible time. Hoping you get benign results and relief from your pain.
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((((Ruth)))) - no advice to offer, just good wishes.
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Ruth.....sending you lots of hugs and love.0
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Ruth - I have no advice, just love, hope and prayers. I'm an inch away from being diagnosed with intractable sciatica (let me translate for you, you're gonna be in this pain forever and there ain't shit we can do for you). I literally told my doctor, thanks guys for the perspective, you make chemo look like a picnic". I"ll pray that your hip iis non- cancer related and treatable!!
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Ruth, Sending my prayers that everything is B9.
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Ruth - I'm just throwing this out there - if it's not C, perhaps a series of epidurals would help? My mom has MS and a lot of back problems and every 2 years she gets a series of 3 epidurals and it has helped tremendously. There are docs that specifically deal in pain management. Have you tried one of those?0
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YAY to Char for finishing chemo!!!!
Ruth, so sorry that you are havving such a bad time. Hoping that pain is NOT cancer and that there is a miracle just waiting to be uncovered to get your pain under control. I have always believed that people in chronic pain are only treated half way. What I mean to say is this, Doctors try to treat/medicate the physical aspect of pain and forget about the mental/emotional parts of pain and how it devastates lives Have you considerd trying antidepressants and seeking out a good therapist for support? Also, is there a medical facility like Mayos near you? Just a few thoughts.....
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Thinking of you Ruth
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I just want to say that I am taking a break for a while. This past year you have all been so kind and supportive and I don't know what i would have done without you. I feel that I need to try and put Cancer aside for awhile.
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Totally understand, Bernie. I took a break a few months back, too. Big Hugs to you. Be well.
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Ruth praying for b9 results!
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Just a quick post in hopes that some of you that need some nutritional help will consider The Budwig Protocol. Google Dr Johanna Budwig or Budwig Diet. I went on it and in 3 weeks raised by WBC from 3.1 to 5.1. My Dr was amazed. Altho' it doesn't sound very appetizing, once you add blueberries, strawberries, walnut or Brazil nuts, cinnamon and Manuka honey, it is really quite tasty. I have much more energy and eat it for breakfast and sometimes lunch. I am currently NOT in treatment. If you are in treatment, PLEASE check with your Dr first before trying it. The basics are just Cottage Cheese and Flaxseed Oil. Flaxseed is very good for breast cancer patients. It does not interfere with estrogen like Soy does. Here is the link on Youtube (http://www.youtube.com/watch?v=RSoddptWL0s) showing how to emmerse the oil into the cheese. The cottage cheese is just the delivery system for the oil to be absorbed by the cells. Please check my sources on Google. Lots of misinformation being given about Flaxseed...it is really good for prevention and recurrence of BC. This diet is also rx'd for other ailments as well.
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Bernie,
I understand, too. Give those big beautiful pups a hug for me!
Love,
Christina
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Good Morning Ladies
Bernie - will miss your posts. Take care and keep well. Hugs
Ruth - CharB22 mentions Pain Management. We also have special Pain Management Clinics here in NZ. Do you have these where you live? Maybe they can shed some light on your pain and help you manage it. Here's hoping for you.
Wrenwood47 - you mention flax seed is good for you but Lovelyface says it give her painful breast lumps so maybe it just does not agree with her. Odd that it gives her breast lumps though.
So many things with breast cancer, you start off with one thing and end up with so many other problems. Cancer sux.
Have a good weekend ladies. Lots of hugs. Annie
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This is a direct quote from American Cancer Society:
"Recently, attention has focused on the flaxseed itself, which is a rich source of lignans, compounds that can act as anti-estrogens or as weak estrogens. It is thought that lignans may play a role in preventing estrogen-dependent cancers, such as breast cancer and other types of cancer. Lignans may also function as antioxidants and, though mechanisms that are not yet fully understood, may slow cell growth. When flaxseed is eaten, the lignans are activated by bacteria in the intestine. Lignans are not present in the flaxseed oil."
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Kathyrnn,
We found the soap at TJ Maxx. Thanks for the suggestion. I'll give it at try. Thanks everyone else for the suggestions too. I will likely give those a try if this doesn't work. On a side note I had my 2 of 4 of A/C yesterday. I hope the SE aren't as bad as last time!!! I won't hold my breath, but I'm trying to stay positive.
Have a great weekend everyone!0 -
Uncle Sam cereal is delicious, has flaxseed, and no sugar! Very crunchy and really hits the spot with fresh fruit on top.
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Bernie - take care, definitely going to miss you.
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Thank you for your kind thoughts over my anxiety and concerns.
I have had many many epidurals. After the laminectomy didn't work, I went to a hospital pain clinic and I've been on Lortab for over 3 years...was taking 10/325 4x a day and now only take 1/2 tab two times a day, maybe 3, for a total of 1 1/2. It helps some but not something I look forward to doing for the rest of my life. I can't walk around the block without paying dearly for it later. I am doing an antidepressant. I have seen 3 chiropractors, 2 (expensive) manual therapists, acupuncture, 4 rounds of physical therapy and recently tried Lyrica...no help. Added Cymbalta, but has not helped with the pain. Now that I think of it, it better damn well be cancer because nothing has helped !!!!!!!!!!!!!!!!!!!!!!
If I have the test Wednesday, I won't have the results until a week from today. I just don't think I can stand the waiting. I told my best friend and she's like casually, oh, just wait and see what the results are before you panic. Doesn't she realize that its all I can think about? And it scares the very crap out of me every time it pops back into my mind. When it turns out not to be bone cancer, I'm going to be very annoyed I spent so much time and energy fretting about it!! But the lesion wasn't there 16 months ago on the last bone scan
and the new pain is really bad. Thank you for listening my friends~
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Uncle Sam cereal??? Never heard of it. What store has it? I would like to try it!
Tracie, How are you doing? Been thinking about you. I saw my Onc on Monday. We talked at length about the memory loss stuff. Chemo brain and chemopause/menopause are to blame. She understood how scary it is not remembering things that you really should. It was good too, that my DH was with me and got to listen in. Helps him to understand that this memory problem feels very seroius to me and that I not just being a ditz.
(((Ruth))) will be keeping good thoughts for you
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i think whole foods carries uncle sam's cereal.
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Wrenwood47 - how did you get on with your lifestyle survey you did a little while ago or did you post rhe results and I mised them? Annie
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You know Cocker ? I really really like you...you are a great presence to this thread...!
and..we will miss you Bernie...stop in now and then..keep in touch but understand the need for a break...I dunno,...I have to check in every day even though I don't say much anymore..
Busy weekend in Ohio...going to visit my son at OSU ..taking him a carload of food...I cant' wait to see him!
Oh..I got a book on post trautmatic syndrome..mostly its about veterans but I'm hoping to find some information on cancer diagnosis as well.....physically I feel fine...its the mental stuff that I have a rough time with now and then...
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Titan thank you so much. That really made my day. I said to Christina a little while ago that I don't seem to say the right things on here but I understand all that you ladies are going through and I feel everyones pain and fears. The ladies seem to give such good advice whereas my advice seems weak. But you really made me feel better today so thank you for your kind words.
Lovely that you are going to see your son and taking him the best present that you can - food. Bet he has missed you too and your home cooking. Lots of hugs Annie
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Ruth....Oh the waiting and wondering is absolute torture. I am so sorry you have to go through that right now. It is unfortunately, unavoidable. The last time I had to wait for test results I literally spun around in a circle (think more walk in circles around my house) unable to focus on even the smallest task. So I went outside. Digging in the dirt seems therapeutic to me and has gotten me through some pretty stressful "waits". That may not be your thing, but it was less the dirt and more being outside and able to let those thoughts flow right out of my head and into wind. I can occupy myself for hours doing mindless weeding or even aggressive mowing when necessary all the while relaxing my mind and letting go. Maybe sounds a bit corny now that I said it out loud. Just find a task that you can do on autopilot so you can relax your mind. Lets call it meditation gardening or vacuuming or laundry or............. You get the picture. I hope it works for you. Deep Breath.
xoxo
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