brendahardesty
New User
Joined: 25 Oct 2008
Posts: 1
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 Posted: Sat Oct 25, 2008 8:17 pm Post subject: MM Journey |
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We first discovered that my mother-in-law had Multiple Myeloma in May 2007, after almost a year of running to various doctors and treatments trying to find the source of the pain that seemed to be in her groin area (actually, it was a MM-caused fracture in her pelvic bone that was causing the pain). The months since then have been a roller-coaster.
For a while it seemed we were running to the ER in the middle of the night every month or two. (For fever, nausea, blood clots, unexplained swelling and pain, and those are just the ones I can remember.) She had two stays in the nursing home for several weeks of rehab, and I have lost track of how many times she has been in the hospital.
Radiation for pain relief was relatively simple and was helpful. She had to have two series for two different lesions.
She is currently on her third type of chemo. The pills (I can't remember positively, but I think it was Alkeran) that were supposed to be easy to handle made her terrible nauseated.
The lesson we learned from that experience is how important it is to get ahead of nausea. Don't wait until it gets really bad. MIL was not in the habit of taking many medications, and she had to learn that it was important to take anti-nausea pills around the clock for a while.
The VAD infusion treatments (orange stuff dripping into her vein for 3 days at the hospital every month) worked well, and were easy on her, we thought. That was before she came down with blood clots in her legs.
The lesson we learned was how important it is to continue to be physically active, even if you don't feel like it. Her immobility added to the VAD probably created the clots. Now she is on blood thinners for the forseeable future. Why didn't the hospital use the little electric leg massagers (like the ones that my sister got after her knee replacement) as a preventative measure? Who knows...
Blood thinners are a pain. Her numbers were up and down and all over the place. She finally stopped eating brocolli and other greens (which contain Vitamin K, which affects the thickness of the blood), even though the experts said she could eat them as long as she was consistent in the amount and frequency.
During her break from chemo caused by the blood clots, the Groshong catheter they used for the VAD therapy got infected and they had to remove it. We were very careful about cleaning it the way they taught us. But I have since learned that catheters are prone to infection.
Now she is on thalidomide pills, and that is going well. She was able to wean off the anti-nausea pills. The lesson we learned here is that the docs don't always remember what you are taking. Her doctor was shocked when he found out she was still taking anti-nausea pills around the clock, but he had never told us to stop....
Thalidomide is terribly expensive--$3500 for 4 weeks of pills. Thank goodness she has excellent insurance.
Her inital series of staging tests were in May 2007, and he said late Stage 2 or maybe Stage 3. The tests looked better when they ran them again back in Dec 2007 or Jan 2008, but the cancer was still there, and in fact she had an additional lesion, although on other tests she was improved. She recently had a third bone biopsy and we get those results soon.
She has been having blood tests monthly during the entire treatment time. She has 24-hour urine collection tests every couple of months, to be sure her kidneys have not been affected by the MM. Fortunately, the bone biopsies have been less frequent, because they HURT. This last time, I encouraged her to take extra pain meds before the biopsy, and that seemed to help quite a bit.
Bone scans, MRIs, Bone Surveys....what other tests have I left out. There are a bunch of them!
Many of the meds, particularly the pain and nausea meds, have made her sleepy and often not alert enough to remember things. The chemo has drained her energy so that she doesn't do much, and she was previously very active. She has not driven a vehicle on the road since this MM saga began.
I have read that the average for untreated MM is only about 8 months after diagnosis. She is now at about 18 months and still functioning, so I suppose the fight has been worth it.
We know that anytime the ER trips might start up again. Side effects have been the real problem in her chemo treatments.
So few people have this disease, compared to a cancer like lung cancer. I wanted to share a bit of what we have learned in case it helps someone else.
Brenda |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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| Posted: Sun Oct 26, 2008 7:46 am Post subject: Re: MM Journey |
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Brenda, I am very sorry about your MIL cancer. I do have some experience with MM. My ex-father-in-law fought it for 6 years until it finally took his life. Most of those years were in and out of one type of treatment or another. It is a long, hard battle... in and out of the hospital multiple times, broken bones that just would not heal, etc.
But he did like long enough to see all of his grandchildren. So those years did have great times for him and for us.
You and your MIL are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
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