A Care Givers Dilemma...
I am representing my wife on this forum and as a novice to forums, I apologize and hope I do this correctly. This is her story... with a question enclosed.
After a hysterectomy, my wife was told that some of the histology showed evidence of endometrial cancer. It had not reached the lymph nodes, but had reached the branches to the lymph nodes. Before beginning Chemotherapy treatment, a scan was taken and was shown to be negative. She then had 6 treatments of Taxol/Carboplatin Chemotherapy and using the Oncologist's metaphor, "we are going to use a sledgehammer to crack a walnut", so we can stop any potential cells from spreading. She did well during the treatment, suffering mostly temporary loss of taste/energy and bone pain relating to the Neulasta, which was not pleasant, but, all in all given the situation, continued on as normal. After treatment, she had another scan which again was shown to be negative. Negative before negative after, does it get better than that!! We were very happy.
Her follow up appointment was scheduled for 3 months after the final treatment. During the lead up to the appointment, she developed what we thought was Bronchitis; she still went to her follow up appointment and the oncologist gave her a clean bill of health, while acknowledging she was a bit 'weazy'. Over the next 10 days, her breathing deteriorated and we went back to her primary care physician; he sent her to the ER because he was concerned she may have a blood clot on the lung, having recently received Chemotherapy treatment.
The ER scan showed that she had developed growths in her Mediastinum and there was evidence of metastasis to her spine! Those results completely floored us! Two scans before and after treatment came back negative and less than 3 months of finishing treatment the cancer had spread as if she had received no treatment whatsoever!! The shear severity of the spread was astonishing and overwhelming!
Shortly after diagnosis, the vision in her left eye became distorted and a head scan showed several spots on the brain. Her walking became more difficult, in particular putting weight onto her left leg. A subsequent X-ray showed a growth in her hip!
Standing became painful and without pain meds, her pain level could go from 0-10 instantaneously! A scan of her lumber region indicated a growth applying pressure to that region.
All in all, she completed 27 radiation treatments and begun Chemotherapy with Doxil /Avastin. The positive aspects of the treatment were that after every radiation session, there was a beneficial effect on the area of concern. Her breathing improved and is now Ok, her vision improved to 90% of normal, she could walk again with the aid of a walker, without pain. After the final radiation session, she walked (with a walker) into the restaurant, sat for the first time in weeks and walked out. It was strenuous, but, she did it! We were happy and Optimistic.
All in all, the treatment was working and she was making progress! We knew a cure was out of the question, but, control and the basics for a quality of life were our goals. The Chemotherapy treatment had been suspended while she was receiving radiation to the brain. Once completed, the Chemotherapy was recommenced.
We were told that Chemotherapy and radiation treatment especially to the chest can cause sores to the mouth and swallowing can be difficult. Heartburn can also be an issue. We were also told that you can be given a solution to swish for your mouth and one to numb your throat for eating. From a carers perspective, this belied the seriousness of these conditions and what a profound effect they can have on the patient.
About a month after starting the Chemotherapy again and 2weeks after the second session (Doxil/Avastin, then Avastin only); I had to admit my wife to hospital. The sores in her mouth, the acid reflux and probably sores or burns to her esophagus developed to the point where she could not eat and couldn't take her meds. Everything that went down her throat resulted in what was thought to be severe heartburn. The eating and fluid intake was a gradual decline over a two week period. Up to that point, my wife was in good spirits, her mobility was challenged, but, she had lost weight and muscle mass, but the plan once the sores eased off was to eat more and begin physiotherapy. By the time I admitted my wife to hospital, she couldn't swish the mouth solution and she couldn't drink the Carafate for her throat, which seemed to have had little impact. It was all too painful. Over that weekend she had stopped talking and had to write me notes to communicate and then I noticed the notes didn't always make sense.
This why I am posting on this forum; my wife is in hospital and has regressed into herself. Her eyes are closed, but, she nods and shakes her head to queries; so she is still there. Ironically, a head CT scan showed that the brain tumors had reduced, no evidence of swelling or clots and so the doctors didn't understand why she had regressed? "The brain is complicated..." was one quote.
This is now the carers ultimate dilemma! A medical team at a loss and what do you do to keep them from believing it is all a lost cause!! One option was for a detailed MRI of the brain, but the doctor thought that wasn't a good idea given her state and the time these take. I still think we shouldn't remove that as an option.
So, if any of you have any experience with such a situation and I know it is a long shot; please let me know. I would be so grateful, it's my job to keep the medical team interested and I'm NOT interested in the phrase, "there is nothing we can do..."
From my perspective, and for anyone who may benefit; the sores to the mouth and throat that resulted in a deterioration of appetite and fluid in take, resulted in dehydration and electrolyte imbalance. Weight loss was accelerated as was muscle mass. The Chemo on top of the radiation compounded this issue and now sitting in hindsight, there should have been check points and a brief from the medical team, that close watch on this should be exercised as with this intense treatment, the right nutrition and fluid in take is critical. A week is a long time during this period and a lot can develop.
Again, from a carers perspective, because you are present all the time; something's can creep up on you and since we were seeing the doctor within a week and my wife seemed ok in herself, I did not get too overly concerned (but, I was concerned). I always thought her sores would get better, but, with the Chemo and her white blood cell count dropping, the sores were actually getting worse. In hindsight, I didn't fully appreciate the full aspects of this side effect.
In this case there is more than just brain cancer at work, but, I felt the dehydration had slowly crept up due to less and less fluids being consumed due to her throat/heartburn pain and this somehow had an influence on how the brain cancer impacted her cognitive functions and it happened rapidly over 2 days.
Well, that is our story, I sit with my wife, put on her favorite programs and hope to stimulate her out of her sleep. I still don't really understand what happened and so...
Respect, Strength & Courage to all battling this awful disease.
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