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Have any of you had side effects that your doctor couldn't get a handle on?
iv had a list of simple to severe that some just haven't been figured out yet. All of us at Whatnext.com are wishing all of you the best!
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Procedure or Surgery | Abdominal hysterectomy
Based on others experience, I think I’m doing quite well after a large, vertical incision. But there is so much that I still can’t do.
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Oh No | Health insurance issue
I lost my job in August and started a temporary insurance plan Sept 1. At the end of Sept I had unexplained pain and ended up in the ER and got my diagnosis. I honestly still don’t know what they will cover in the end. I’m still waiting for the other shoe to drop.
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Urban fantasy author passed away over the weekend
Rachel Caine was a fairly prolific fantasy author. She ha an aggressive form of soft tissue sarcoma. She went into hospice care in Sept as she had run through all treatment options, including clinical trials. And in Texas, I guess palliative care is only available through hospice. I'd become friendly with her on Twitter.…
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Covid
Has anyone had Covid? We have it as Nd I’m Worried as my husband has prostate cancer and is on xtandi. Just wondering if anyone been here and has any insight
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head wear
where is the best place to shop for head wear
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Decision Point | Hospise or chemo in vein again
Had port put in twice and went throu vein chemo twice and horrible side effects.Been on Ibrance then Xeloda for years but don't work anymore so another port in right side, where cancer was original and had 13 of my lymph glands removed so worried over lymphoma but 2 cancer dr. said it wouldn't affect it so decided to try…
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Celebration | Anniversary
Eight years ago today, I went for that fateful CT scan that showed I had stage IV lung cancer. I remember as clear as day driving to the testing site, not really concerned at all ... certainly not concerned that they might find lung cancer (I thought maybe we would find thyroid cancer since I was having issues with weight…
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Loss | loss of independence and told I will most likely never be able to stand up straight, that it
This is a issue totally unrelated to my recurrent cancer. I had an MRI several months ago and even though I am stage 3 kidney disease, I did what 2 doctors told me to do which was have the contrast dye. This was my 2nd MRI in the last 2 months. My oncologist and pain specialist both had my MRI's and they both said the same…
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Drug or Chemo Therapy | Chemotherapy
I did 2 weeks of chemo, (pills), and quit. The strongest side effect I had was red hand/red feet. I had the same side effect 19+ years ago when I had pancreatic cancer. If I ever get cancer again I will not do any type of treatment chemo or radiation. Never again!!!
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Have you had your flu shot yet?
Experts believe that mid-September through late October is the ideal time to get your flu shots. My hubby and I will be getting ours next week. What about all of you?
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Lyymphadema of the face.
Apparently. What I have is lymphadema making my face swell up. I haven't had a chance to see the doctor yet and won't for 2 more weeks. I'll ask more questions then. In the meantime, has anyone here had it. How do you go about massaging it to help it drain?
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Afinitor
Anyone with MBC experienced Afinitor with Exemestane? I am looking for “what to expect” and “how to manage” side effects.
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Radiation | External radiation
The initial treatment isn't bad if you really adhere to applying aloe and burn cream hourly. But the long term effects are bad. The muscle and skin are completely altered. Mine are so tight they pull my body out of line. My implant wasn't able to drop into the pocket because the skin and muscle never relaxed., I have…
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Greg's progress
I don't come on very often but for some reason thought of Greg today. It's good to see everyone being so supportive. Of course, why wouldn't he get all this support. I'm sure he's feeling all the love. Hope his hospital stay is short and is able to get home soon.
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Oh No | Not knowing that a bum in the head was the beginning on cancer
When my husband found the 1st site on the top of his head, he had thought that he had hit it and not remembered, not knowing that it was the beginning of cancer. So until it had started growing, he didn’t see a Dr to have it checked out.
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Psa up. Now what do we do
Hi the psa is up after a couple of years at close to 0. We have had chemo immunotherapy and are on xtandi and elongard. Not sure what the dr will recommend any thoughts on what we might do next. We are trying to do anything but chemo. Thanks in advance
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Thank you, Greg. An Inspiration, A Fighter, A Survivor
I haven't been active recently on What Next, but am an old-timer. So I've known Greg for many years; read his insightful & encouraging posts, & followed his amazing, inspiring story of survivorship. I am heart-broken that cancer has taken him from us, and more importantly his family, friends & loved ones. We have learned…
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Celebration | Finished treatment
September 11,2019
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Decision Point | Go alone?
Sometimes I feel like I want to go to my first oncologist appointment alone, but a family member insists on going. It makes me feel anxious.
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Decision Point | decision to go with the neurology group that my oncologist referred me to.
Thank you for sharing your experiences. It always helps me think things through especially when I am not sure what I should do. I want to work with my oncologist because this is more cancer related and I am worried about a possible cancer connection although the back is a problem as well. About 2 months after my surgery…
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My turn for a medication question - Megace
We may be going a different direction than chemo, after I get a set of CT scans. Had an appointment with my oncologist, virtually, this morning. Rather than the traditional taxol/carboplatin, he thinks we might be better off with Megace. Anyone been on that one? I think it's akin to tamaxifin (or however it's spelled - I…
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Celebration | Relief At Minimal Treatment
After thinking initially that I would have to undergo radiation, that was off the table when we decided to move forward with mastectomy. After getting news that there was no evidence of spreading to the sentinel nodes, that was another relief. After the Oncotype DX score came back low and my oncologist said we would just…
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Procedure or Surgery | Sentinel lymph node biopsy
Sentinel Node biopsy was done at the same time as the mastectomy. I really didn't know people did it at another time. So I just thought it was part of the deal with the mastectomy.
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Recurrence treatment decision inquiry
Hi everyone, a family member recommended this network and I have joined in hopes to share my experience and obtain thoughts from others going through the same. I have a diagnosis of Endometrial Serous Carcinoma stage IV. I heard news that my cancer has come back after going through the first line of treatment options which…
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Clinical Trial | inhibitor of cyclin D1/CDK4 and CDK6
Started Sept 2020. This is a trial of ribociclib combined with Femara. Only side effects so far are fatigue. 2 women are on this trial at our facility; the other woman had to reduce the dosage due to her lab values. As of Oct 22 Pat's labs values are still reasonable., CA-125 reduced from 327 to 307---not great, but down.
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What to do next...
What to do next
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Clinical Trials
Are there clinical trials being done for metasticized triple negative cancer
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Prayers for Greg
I usually check out the What's Next Digest when I first open my computer, and I am always a little disappointed when it skips a day. But, now, I find myself being disappointed when there is still no post from Greg. It has been 20 days since he left a word here about the stomach tube craziness. I know we are ALL concerned…
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Trelstar
Hi All, I'm trying to get any info on Trelstar. Due to the shortage of Lupron Depot my Oncologist wants me to start taking it. I've been on Lupron for 4 1/2 yrs. I was hoping to be off of it. My Ca27.29 us up and down. I'm use to being 41 or 42. I've gone up to 67, had pet scans. watched everything I did. Got it down to…
