My Husband, My Life, My Love, My Family, My Cancer
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KBL,
I would talk to my doc about the constipation stuff. Especially with lobular, as we know, it could actually be something else.
But seriously, folks, someone has to give a writing course to the radiologists who write these reports. First line says "very mild sclerotic changes" (that's good) but then what is meant by the last line -- no definite CT evidence of extra osseous metazoic disease? Does that mean no NEW disease? Does that mean they don't see it elsewhere? Huh?
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Thank you, BevJen. It's been three CTs, so nine months' worth of them saying this. I have never had any of my cancer show on CTs. I think they're such a waste of time. I've asked for abdominal MRI. I think they think since it doesn't show that there is nothing to worry about, but nothing has ever shown on PET or bone scan either. It's very irritating. I think they are saying in the last line that they can't see any evidence on CT of the massive amount of extra osseous metastatic disease that is actually there and shows totally throughout my spine and femurs on the lumbar and pelvic MRIs I get. That should tell them that these CTs are worthless. I will definitely be asking for more testing on this constipation thing. It's just too weird.
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sounds stable to me.
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Sunshine - so sorry about your dog. We lost our 12.5 year old yellow lab almost a year and a half ago and then just a few months later, I found out that my cancer had returned and it was stage 4. Anyway, we were hoping to get a new lab last year after I finished chemo and radiation if I got to where we had the cancer under control. Fortunately, the cancer is under control (knocking on wood and thanking God). I have been dealing with back issues since a little after I finished radiation. The back problems are not cancer related, although I am suspicious that some of the treatments or meds may have set problems in my back that never bothered me before. I am doing some better but not good enough to take on a puppy yet. Luckily, I have some horses that love being loved on and are as spoiled as most people's dogs. DH won't allow my horses in the house though!
Candy - As mentioned above, I started having some back pain last April. My MO did a MRI on it and it appears I have a bulging disk and arthritis and some other degenerative issues that never bothered me until last April. I really do not know what fired my back up but it gave me horrible sciatica in addition to the back pain. I had to walk for at least 30 minutes every morning before I was able to sit on a toilet and my husband and I had to switch sides of the bed so that I could put my first weight onto the good leg. I went to a spine specialist and he prescribed PT. PT helped me maybe a little but not much and I eventually was "flunked" out of there because they could not get any more improvement and they said I needed to schedule surgery. I did over the course of time last year get 3 separate epidurals and I think that the 2nd and 3rd shot helped some. MY MO has been great working with me on whatever I need from him to do to avoid back surgery. I would have to say that by a fluke the best thing that has helped me so far is that I went to see my lymphedema therapist to deal with the worsening of that following my radiation in February and March on my collarbone. I had put that off because of COVID and the fact that I could not walk but finally in October, I went to see her. She actually showed me some things to help my back and also told me about dry needling. I am by no means heeled but have been improving. My lymphedema therapist told me that her research had shown that if dry needling works for you, you will know within 5 sessions. I have had 3 and even after the 1st session, there was some improvement. Hopefully, you can try PT and perhaps dry needling may be something for you to try if appropriate for your back issues. Most insurance will not cover it but my first session was free and then $30 for each session after that.
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KBL I am glad to see that they are not seeing definite evidence of osseous metastatic disease. I am glad you are going to check into the constipation if you are going but they are seeing it. Worth it to make sure nothing else in there.
Got my second portable washer, sitting in my tub with the other one. Will be doing blankets galore which will be nice. Already broke down the large box and going to toss the insulation in the garbage. No room to keep the box in the house. Excited about this. Got two blankets going at the same time, squeal. Other than that, taking out boxes and extra garbage. Might walk since no other delivery coming today and it is sunny out. I will see what I want to do after lunch. Hoping to get 4 smaller blankets done today and then the bigger ones tomorrow. I will see how long they take to dry. Just using my small dryer first. I will NOT be purchasing another small dryer as that is overkill.
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I'm just a fly on the wall, but I love this thread. Candy I take Cymbalta, the first 2 weeks I had horrible stomach aches from this med, but after I toughed it out, it has done wonders for my joint pain, nerve pain and my irritability that I seemed to not have under control. Imo, it's worth trying.
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Gamb~welcome to the thread! I'm glad to see you're no longer a fly on the wall..... it's awesome that cymbalta worked for you, I could use some joint relief as well. Thanks for sharing your experience for candy! 🌻
Cowgal~ welcome back, it’s been a while. Good to see you. 😃.
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That’s the problem. They never see the osseous disease on CT, but I’m covered in it. It only shows on MRI. That’s why I think they’re worthless for me, just like PET and bone scans are worthless. I’m going to start fighting for MRI only.
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"no definite CT evidence of extra osseous metazoic disease? "
These things are almost always verbally dictated & transcribed by software now (unless the dr pays for a live transcriptionist). This sounds like an error of transcription to me & was probably meant to say "no definite CT evidence of extra osseous metastatic disease" meaning I don't see any evidence of mets outside of bones. Extra here means "outside". The 'no definite CT evidence' is a bit of cover your ass language. I don't see it - doesn't mean it's not there.re the constipation, I'd ask if a follow up with gastroenterology is justified because CT is actually supposed to be the best modality for it. "CT has a reported sensitivity of 96% and specificity of 93% in the identification of constipation." They're seeing something and if you're going, I'd wonder if there's an area of a fecal impaction that you're bypassing. I think the doctors might want to find out if the area identified is always the same span of colon or a different span as that would help narrow down what is happening.
But it's a good scan overall so celebrate, KBL!0 -
Thank you, Moth. I will probably make an appointment with my gastro. Unfortunately, I do have metastasis outside of my bones, in my stomach, that only showed up due to symptoms and a biopsy. I really don’t trust any imaging, as imaging, I’m sure of it, made doctors feel comfortable that I didn’t have cancer when I did. That’s just me. I’m sure it works great for most.
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Cowgal- When I have done PT in the past (I have had back issues for YEARS), they do stretching, exercises, spinal traction, heat, massage, and TENS. I would love to be able to try some, if not all, of that again post COVID. I saw an ortho doc a couple of years ago and they said 1. surgery, but I am not a surgical candidate or 2. epidurals, but would not do it on me due to my blood counts or 3. PT.
I have not heard of dry needling. I will have to research that and ask the PT therapist if he does that, if I ever get back there.
gamb- Thanks for chiming in. Good to know. I Googled Cymbalta. And it did say it is used for chronic pain, fibromyalgia (I don't have that I know of), and chronic back pain. I just thought it was for mental illness. But still... lots of potential side effects. I just don't know.
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candy - sorry to hear of ongoing pain issues. I hope you find a solution. Pain is just so exhausting physically & mentally draining.
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Candy - Be careful of TENS units. Evidently, they are not appropriate for those of us with MBC.
Micmel - thanks for the the welcome back!
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Thanks cowgal. I have heard that. I last used one at PT before I knew of the MBC. It helped, so of course now I cannot use it. Lovely. I wonder about heat or massage? And I wonder about the traction with spinal mets. So.... even when I can go to PT, can they do anything????!!!!!
Edited to say--- Dry needling or acupuncture--- with low white counts???
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Candy - I found this with a Google search about TENS units: https://uihc.org/sites/default/files/contraindication_precautions_best062018.pdf . It may be something to ask your care team about as well if these other treatments you mentioned are okay. I have been using heat, ice, some stretches, modified sleeping position (I call the double wedge) and meds to help with my back issues in addition to the dry needling but I do not have cancer in my spine so your situation may be more limiting or not.
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Sunshine,
My heart hurts for you. I know how hard it is when we have to let them go, and I never gets easier. I will pray for you in the coming days for peace knowing what a wonderful home you gave Jeeves.
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Sunshine I think donuts 🍩 are exactly what Jeeves wanted. Sorry for your loss.
Hope everyone is ok this evening. take good care
Tany
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Had a Thyroid ultrasound this morning with results posted to MyChart within 2 hours! Stable thyroid nodules consistent with thyroiditis (sp?) and unchanged. Follow up US in 12-24 months.
DH had low T, hoping that explains things, he double dosed and feels stronger today but we still see a neuro doc next week. Thanks for all the good vibes.
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Mae~ glad that you're looking into DH. Gotta take care of our care givers. They work so hard. We're both lucky that way. Congrats for good results
Tanya~ waving hello sweet friend.
BooBoo~Hello my friend. I'm not giving up trying. I'm just never alone. I want to chat some!
Sunshine~Thinking of your family. I know what it's like to think they should be around. It just takes time. This month was the first month I didn't cry everyday for Tag. It's a difficult feeling of helplessness . One day at a time.
Sondra,Cowgirl,BevJen,Gam,Minnie,Mara,Candy,Karen,Moth,Goldens, a big hello. Runor... you too.Lurkers. Hello to you too. You should post more and lurk less. 🤪🤪
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Insomnia!!!!!!!!!!!!!!!! Strikes again. Oh gooooodddnesss me. Ick. Ugh. Arghhhhh bleh. I need to start reading again. Yeah that’s it.
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Mel, I feel guilty as a lurker even though I come here once in a while. I can join you in insomnia. I have been battling sleepless nights since my first kid was born and she cried every night for many years, then the second child the same, and now they are teens, they can sleep but I learned I can't anymore. I'm used to this. Netflix helps sometimes
Have you watched this one? I highly recommend
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Lily~Hello! 🌻 I will take your suggestion and give it a try. I don't know what my problem Is. maybe it's the mom ears as well. Thank you for letting me know you're out there! Welcome to. My second home.
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Mel
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Love professor snape!
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He was great, loved the reveal in the Deathly Hallows about is love for Lily and the fact he was actually protecting Harry all along.
I am really tired, silly me, decided to stay up late watching the senate and house proceedings. Of course, I still woke up early and am lacking sleep. Not doing too much today, need to get out for a walk. Did two loads of laundry at the same time, love the two washers side by side, got 5 blankets done which is great since each one only holds one blanket. Might bust out the first drying rack I had to help things dry while other things are in the tumble dryer. I am officially stating I am obsessed with laundry.
As far as the insomnia, could you possibly use a meditation talk down or rain sound to relax the mind? I used that my first year of cancer when I could not sleep, helped stop waking up thinking I am dying. I also use the 4-7-8 breathing to when I need to relax my body more.
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Mara~ I have my Alexa sound machine. I use it every night. I don't know what my problem is. I'm going to mention it to my palliative care doctor. I see her next week. I have a list growing. I even try to stay up later, but my body wants to lay down around 930 ish. I fell asleep finally around 11:45 pm Counting sheep doesn't work either.
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It’s the falling asleep for one minute and waking right back up that I hate. What the hell is that
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That's how it is for me hourly. It dives me crazy. Another problem for me is I drink too much water all day long. That's all I drink really. Always have. I get up at least twice a night to go to the bathroom. I have a Weak bladder. Too much coughing and or laughing , sneezing, jumping, any sudden gut action makes me leak. I freaking hate my bladder. I can never fully empty it ever. I can go on command. It drives me Insane. Another list item. Lol. I don't know how we deal with all the health items and issues. Looney bin must have a bin with my name on it. !
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Hello all.
I fall asleep fine. But the aches and pains, toss and turn is what is my problem. I turn to my left (I like sleeping on my left side) and then I can feel my shoulder hurting in my sleep. So I wake up enough to turn over. Then pillows under knees and on my back. Then back hurts and legs are jumping, so turn to right. On right for a while but hip hurts and so turn again. Over and over all night. Some nights I get up at 2am and just sit on the side of the bed. Oh, and the bathroom trips a couple of times to pee.
Mae- I too have a thyroid nodule. Found in 2015, 2 years before the cancer. 2 biopsies, in 2015 and 2016, were benign. Looks like a second Adams apple on my neck. I had US a year ago and stable. Need to do another soon, I guess.
Not much going on here. Vacuumed and cleaned the bathroom today. Scheduled oil change on my truck for next week. I live in town and they will pick up my vehicle, do the oil change, and return it to me. Nice of them. That way I do not have to wait at the shop (Covid). I just wish I had something constructive to do. I feel I am whittling my days away. But I don't feel all that great to have a busy schedule anyway. I have had the TV on a lot with all the happenings in the U.S. Crazy.
Booboo- You had PET today, right? How did it go?
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Mae and Candy,
I have what they call a multi nodular goiter on my thyroid -- it's several nodules on the thyroid. I take levothyroxine every morning for hypothyroidism. They found it, oddly, when I was going through either chemo or radiation on my first bout with cancer in 2004. One day my heart was racing, and so I went to the ER. They admitted me and in doing scanning of my heart (which was fine) they went a bit high and found the multi nodular goiter. I have to have a sonogram of my neck every year. I've only had one biopsy in all of those years, and it was when my usual tech who does my sonograms wasn't there, and someone else did the sonogram instead. Anyway, I see my endocrinologist once per year after the sonogram, she checks me and checks my thyroid levels, and that's the end of it.
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