Adventure In Pain
Lots has happened since my last post, and this is a record of those events. I have to write it somewhere. It's interesting to me, part of the journey, but you'll be the judge. It's mostly whining.
Background for the reader: Last Wednesday I had an infusion of a study drug and an infusion of Zometa, and also began a week of oral Valtrex in case my back pain might be the prodrome for shingles. By Friday the pain in my back and abdomen was much more pronounced, continuing into Saturday. I posted about that here.
Saturday, February 20, 2016:
I have a new respect for people who are obliged...
Source: Myeloma Hope - February 24, 2016 Category: Cancer & Oncology Tags: DEX dexamethasone kidney pain Source Type: blogs
Lots More Whining
Just can ' t get enough of it!Last Wednesday ' s visit to Mayo Clinic marked the end of the every-week 200-mile round trips, but the results didn ' t shed much light on my medical condition. Is the " flare " in my vertebrae due to the myeloma itself, or is it inflammation caused by my immune system attacking the myeloma? We ' re hoping for the latter, of course, and sticking with the current medication study, but this does require more than a little faith.Here is the whining: Last night I was quite uncomfortable for much of the night. The neuropathic pain on the right side of my back became much w...
Source: Myeloma Hope - February 20, 2016 Category: Cancer & Oncology Source Type: blogs
Lots More Whining
Just can't get enough of it!
Last Wednesday's visit to Mayo Clinic marked the end of the every-week 200-mile round trips, but the results didn't shed much light on my medical condition. Is the "flare" in my vertebrae due to the myeloma itself, or is it inflammation caused by my immune system attacking the myeloma? We're hoping for the latter, of course, and sticking with the current medication study, but this does require more than a little faith.
Here is the whining:
Last night I was quite uncomfortable for much of the night. The neuropathic pain on the right side of my back became much wo...
Source: Myeloma Hope - February 20, 2016 Category: Cancer & Oncology Source Type: blogs
Some News Might be Good News
Tuesday night I felt a little back pain while in bed, unusual for me. As it happened, we had already scheduled an MRI at Mayo Clinic for the very next day to look at the nearby vertebrae, numbers T5, T9, and T11, and compare that with MRI images from last October. Doctor WG called last night to talk about those results:Neither the doctor nor the the radiologist can see any significant damage to the bones of those vertebrae. That is very good news.However, we still don ' t know for sure whether the PET scan hot spots are due to increased tumor burden or to inflammation ( " flare " ) caused by my own immune sy...
Source: Myeloma Hope - February 12, 2016 Category: Cancer & Oncology Source Type: blogs
Some News Might be Good News
Tuesday night I felt a little back pain while in bed, unusual for me. As it happened, we had already scheduled an MRI at Mayo Clinic for the very next day to look at the nearby vertebrae, numbers T5, T9, and T11, and compare that with MRI images from last October. Doctor WG called last night to talk about those results:
Neither the doctor nor the the radiologist can see any significant damage to the bones of those vertebrae. That is very good news.
However, we still don't know for sure whether the PET scan hot spots are due to increased tumor burden or to inflammation ("flare") caused by my own immune s...
Source: Myeloma Hope - February 12, 2016 Category: Cancer & Oncology Source Type: blogs
No News Is No News
We still don ' t know if the current immune therapy is working. Are the vivid PET scan hot spots just " flares " of inflammation caused by my own immune system attacking the myeloma cells, or are they actually increases in the myeloma tumor burden?
Yesterday ' s MRI of the thoracic spine may give us the answer, when those 3D images are compared with a previous MRI from last October. That takes an expert radiologist, and results should come today. A preliminary view seemed to suggest no changes in the bone structure of my vertebrae, but I ' d like that confirmed before I run again.
If you haven ' t heard, a g...
Source: Myeloma Hope - February 11, 2016 Category: Cancer & Oncology Source Type: blogs
No News Is No News
We still don't know if the current immune therapy is working. Are the vivid PET scan hot spots just "flares" of inflammation caused by my own immune system attacking the myeloma cells, or are they actually increases in the myeloma tumor burden?
Yesterday's MRI of the thoracic spine may give us the answer, when those 3D images are compared with a previous MRI from last October. That takes an expert radiologist, and results should come today. A preliminary view seemed to suggest no changes in the bone structure of my vertebrae, but I'd like that confirmed before I run again.
If you haven't heard, a good f...
Source: Myeloma Hope - February 11, 2016 Category: Cancer & Oncology Source Type: blogs
Immune Therapy Flare
Wednesday, February 3, 2016:
PET Scan Results:
Today was PET scan day. I had once thought that the PET scan would show definitively whether or not the current regimen was working. However I am currently on a study of immune therapy, and last week Dr WG prepared me for today by explaining that the current study medication could cause the PET scan hot spots to show a "flare." That is the therapy, if it is working, could actually cause previously-existing hot spots to appear larger or more intense than they did in the PET scan of four months ago, because of inflammation caused by my own immune system curre...
Source: Myeloma Hope - February 4, 2016 Category: Cancer & Oncology Source Type: blogs
Scary or Encouraging?
My myeloma is the Immunoglobulin G (IgG) type, so the doctors and I consider that the blood proteins IgG and M-spike (monoclonal protein) are the best markers for my tumor burden. Last Tuesday IgG jumped 21% from 1390 to 1680 mg/dL, the highest value in years and the largest jump I have ever seen between two measurements. That jump happened in just one week.
Either the myeloma has suddenly gone crazy, or something else is going on. This blog is titled Myeloma Hope, so I hope that something else is happening, something good.
My doctor ML warned me in advance that the myeloma markers might not even be me...
Source: Myeloma Hope - January 18, 2016 Category: Cancer & Oncology Source Type: blogs
Modestly Good News
Tuesday, December 29, 2015:
Results:
My new treatment regimen is three weeks old now, and my blood is being checked every week at Mayo Clinic (182-mile round trip). For the first two weeks the myeloma markers went up - the treatment didn't seem to be working at all. Nevertheless, Dr WG and I agreed that I would continue on the study for the first eight weeks, then get the scheduled PET scan to get the best possible information about the state of my myeloma.
However (Yay!), my primary myeloma markers went down a bit at the end of this third week. IgG dropped 12% from 1520 to 1350 mg/dL, and M-spik...
Source: Myeloma Hope - December 31, 2015 Category: Cancer & Oncology Source Type: blogs
Bone Marrow Biopsy
PET/CT scan, PET/MRI scan, 46 vials of blood, two 24-hour urine collections, two more urine samples, ECG, Skeletal (x-ray) bone survey. That is the list of tests required for qualification and for Cycle 1 Day 1 of my new myeloma therapy trial. Not to mention height, weight, blood pressure, temperature, walking blood oxygen, and a short physical exam.
I won't name the medications involved in the trial yet because, in case they don't work for me, I wouldn't want to discourage anyone else from using them. One of them is already a whiz-bang success for certain other cancers. I can say that the study do...
Source: Myeloma Hope - December 11, 2015 Category: Cancer & Oncology Source Type: blogs
Two More Bone Lesions
We have known for months now that the (unnamed) oral study regimen I've been taking was doing nothing for my numbers, IgG and M-Spike, except holding them stable. We held out some hope, however, that it might at least take care of the lesion in my T5 vertebra.
Alas, the opposite has happened. Last Friday's PET/CT shows that the T5 lesion has increased in intensity from 6.3 to 10.1 SUV max. Further, there is a "tiny" lesion with SUV max of 3.7 in T9, and one in the right scapula with SUV max of 5.2. The study regimen works very well for some people, I'm told, but my myeloma isn't fazed by it. ...
Source: Myeloma Hope - October 14, 2015 Category: Cancer & Oncology Source Type: blogs
PET-CT vs PET-MRI
Mayo in Rochester is doing a study of PET/MRI, comparing it with PET/CT for myeloma patients. A standard full-body PET/CT gives a patient one of the largest doses of radiation of all the imaging procedures, but most of this is due to the CT, not the PET. The CT is required because the PET doesn't by itself provide enough information to determine where the bright spots from the PET are actually located. PET doesn't distinguish between bone and soft tissue - it just sees the radioactive sugar molecules that have been gobbled up by active cancer cells.
March 2015 - PET/MRI scannerarrives at Charlton ...
Source: Myeloma Hope - September 25, 2015 Category: Cancer & Oncology Source Type: blogs
Better Still
Today I felt much more like myself, even went for a stroll and mowed a little bit of the lawn. Temps are normal and the pulse oximeter regularly shows numbers in the high 90's.
The pneumonia is on the run, and I won't post any more about it here unless there is a dramatic reversal. (Source: Myeloma Hope)
Source: Myeloma Hope - August 3, 2014 Category: Cancer Tags: pneumonia Source Type: blogs
Recovering at Home
They let me out of the hospital this noon, and I like being with my loved ones. I feel a little better than yesterday, but the regimen is about the same at home as it has been in the hospital. Levaquin 750 mg once daily, probiotics to mediate the effect of the Levaquin on the stomach, lots of sleep.
I'm pretty sure that the pneumonia is viral, not bacterial, because it has responded so slowly to three different antibiotics. Nevertheless I'm taking the Levaquin, despite its risk to the Achilles tendon, in case it really is a virulent bacterium.
Right now my temp is generally around normal, which is a definite...
Source: Myeloma Hope - August 2, 2014 Category: Cancer Tags: pneumonia Source Type: blogs
