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Get Well Wishes for Greg
Let's all post a get well message for Greg. Wishing Greg a successful surgery and a speedy and comfortable recovery
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Pain medicine, are you getting what you need?
With the opioid epidemic going on I was worried that I wouldn't be able to get the pain meds that I know will be needed when I come home. I remember the last radical neck dissection that I had in 2009, now I'm going to have that on the left side as well as the laryngectomy. Last week I questioned my doctor about this. She…
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Has anyone had a sleep study done?
I am having trouble getting any sleep and I figure it's all the treatment, side effects, etc. But I'm wondering if a study would be a waste of time? Anyone had any luck? Or, how have you gotten sleep short of sleeping pills?
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Side Effects | Bone thinning (osteoporosis)
I have a chemo fog constipation severe migraines extremely tired sleep a lot depression fear the unknown. Excessively dry mouth hot flashes anxiety.
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Copy and paste
I keep getting these FB posts about cancer. They ask you to copy and paste to show that you support someone with cancer. How do you feel about these.? As a cancer survivor and the widow of a cancer victim I don’t do these things. I appreciate the thought behind it but I hate to make anyone feel guilty for they way they…
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Has anyone had lymph nodes pop up in a spot far away from your cancer?
I have bladder cancer tht I'm still getting treated for but I am sure I can feel lymph nodes in my neck. I can't see my doctor until Monday.
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I am getting to that point where I can't taste much or what I do tastes terrible.
How long does this last or when will my taste come back?
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I received an estimate on the total cost of my surgery and hospital stay yesterday as a part of my i
This estimate is based on a 3-day stay, I've already been told that I will be there 7 to 10 days, or whatever it takes until I get well. So this estimate is in error to start with, but here is what it is. $232,000.000 Sor we can safely say 250,000 to 500,000. So at this point, I'm just considering all of this to be like we…
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Procedure or Surgery | Surgery
MM attacked my left humerus causing the bone to become so weak I broke the bone throwing a tennis ball or the neighbor dog. 6 weeks waiting for it to heal on it's own for nothing. Ended up with surgery to place a plate on the humerus to stabilize it. Lots of pain involved and now I'm facing the fact I have active MM in a…
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I am being treated at the major health facility near where I live, and they accept my insurance.
I need to see a urologist about what could be kidney issues that may or may not be related to my MM. I called that office to get an appointment and they say that they do NOT take my insurance. Even though it's in the same facility, inside the same brick walls, but a different specialty. I tried to tell this girl that yes,…
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Stage 4 how long will I last?
Stage 4 how long will I last?
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Loss | Body part/function
Lung damage, skin rash & joint pain from transplant.
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Celebration | Birthday
I have celebrated 3 years of my re-birthday! I am 100% donor cells 3 years later.
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Side Effects | Bone thinning (osteoporosis)
There are at least ten side effects on the list of side effects. I experienced side effects of chemotherapy, the stem cell transplant (neutropenic), idiopathic thrombocytopenia; weight loss, anemia, dry eyes, mouth sores, constipation, bone pain, osteoporosis from steroids, weakness & inability to walk unassisted. All…
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Oh No | Just Diagnosed
Diagnosed with a very rare bone cancer; Myeloproliferative Neoplasm that was Myelofibrosis.
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Decision Point | Had to decide to have a stem cell transplant or not. Given a 50/50 chance of survi
It was going to be a long arduous recovery and I was warned of it's difficult recovery. It took at least a year to regain my strength but chemo brain stayed with me for about 2 years.
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Procedure or Surgery | Other
Stem cell transplant left me incapacitated for about 1 year.
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Drug or Chemo Therapy | Chemotherapy
Lost 50 lbs & the ability to walk normally due to weakness in 2016. I had to have chemo for a stem cell transplant.
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How much is a life worth? How high can medical expenses continue to rise?
I am thinking about this today. My most recent bill of over 28k for an hour or less in OR for a biopsy in my throat. The doctor told me she expected it to be a 10 minute procedure. I think it went longer since they found malignant material, but still, I was in and out an in the recovery in an hour. My next surgery I expect…
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Side Effects | Weight loss
How do I get my husband to try to eat? He started out at 157 pounds and is now down to 113 pounds. We go to the doctor in a couple days and I'm go to push to get a feeding tube. Does anyone have any advice?
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I noticed Taylor Swift has revealed that her mom has a brain tumor.
There is an article about it here. Of course there are many. and this is Another case of it doesn't matter who you are or how much money you have cancer shows no prejudice. https://www.nydailynews.com/snyde/ny-taylor-swift-mom-brain-tumor
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I have metastatic NSCL adenocarcinoma I have ...
I have metastatic NSCL adenocarcinoma I have had Carboplatin Altima and Keytruda it's holding off lung modules but not lympnodes I have a rare EGFR mutation
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Oh No | Just Diagnosed
Breast cancer stage 1a. Lumpectomy preformed, 6 nodes removed. Waiting for results about radiation/chemo.
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Oh No | Cancer is back/Recurred
Our MEK-inhibitor trial has come to an end after about 4 years. BUT, we are about 9 years into the Ovarian Cancer diagnosis, meaning we are doing very well. On our last 2 visits to our trial clinic, two tumors had grown a little and the CA-125 was up. So we had to drop out of the trial. (Pat was the only person left i the…
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Our January Newsletter is out and you should get it in your inbox of the email address that you used
If you don't get it automatically, your email provider is blocking it as spam. Please check your spam folders and move the email into your inbox, or mark it "Not Spam", or something similar based on your email providers way of sorting.
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How often do you get a pet scan after you're done with treatments?
I am a couple years out from surgery and finished treatments some time ago. My doctor has told me he doesn't think it's necessary to have a regular PET. Also said my insurance wouldn't approve it if it's not an emergency or if there are symptoms showing of a recurrence. I'm just checking, does this seem normal as far as…
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Side Effects | Diarrhea
Constant after Whipple. Heavily medicated on hydrocodone and elixir of opium to slow down digestion. Losing weight plus chemo issues.
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Drug or Chemo Therapy | Chemotherapy
No bueno.
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Procedure or Surgery | Surgery
Whipple, Northside Hospital staff not well trained for patients after this surgery. Dietician not trained.
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Oh No | Cancer has spread/Metastasized
Waiting to hear if I will get my PET Scan. Very frustrating.
