I went for my normal monthly treatment at the Milton Keynes Macmillan Cancer Unit on February 12th 2009. For a change my IV drip went in first time, they don’t worry me at all now, I am so used to them. The good news is that the Sandoglobulin Infusion is working, basically it’s Human Immunoglobulin, taken from a pool of 20,000 blood donors and made into a clear liquid and infused into me over 6 hours once a month. The infusion is given to me because I have very low immunity and it is working to keep my repeated infections away.
After sitting having my infusion for a while I am called into the examination room to see my specialist, this time I saw her registrar. I got my blood results from my last visit and my levels have unfortunately gone up, which is not good because it means that my disease is progressing to a more active state. Some people reading this will understand the levels and some won’t but here are a few results I have received.
Kappa Light Chain up from November it was 126 and is now 157.
Lambda Light Chain is down from November it was 2.4 and is now 1.0.
The Kappa Lambda Ratio has gone up since November from 52.50 to 111.
My paraprotein is 29.2.
I didn’t get my IGg level
I still have Hyperviscosity (Thickened blood)
The worst part of my results was my MRI scan which I had done 3 weeks ago. I have been getting pain in my spine at the top, middle and bottom so I reported it to my specialist and she sent me for an MRI scan. I was due to have one in March anyway but she brought it forward due to the pain. The results shocked me !!! I knew that the pain was probably due to herniated (slipped disks) and sure enough I was proved right. I have 2 bulging disks in my cervical spine (top/neck) I have one slightly torn disk in the Thorasic spine (middle) and I still have a disc burning out in my Lumbar (lower) spine, which I knew about from my last MRI scan. My scan also showed that the Myeloma (plasma cell cancer) has infiltrated the bone marrow in my spine from top to bottom. The registrar has said that chemo will probably begin in two or three months
I was too shocked to really understand what was said and there were many questions I should have asked but didn’t!!! I have had to do my research to find out what this means. Basically an MRI shows a detailed view of bones, soft tissues and marrow, the scan image looks fairly dark in shades of greys in a normal MRI scan, when myeloma infiltrates the marrow of the spine a more intense signal is recieved by the MRI scanner and it shows up as a brighter, whiter area on the image. MRI scans are used to check for this infiltration and all my previous scans have been negative for myeloma. I now have to have a skeletal survey (full body x-rays) to check for lesions (punched out holes) in the bones as these do not show up on MRI scans. I was due to have this done in March but it has been brought forward because of the MRI results. I will be having a bone marrow biopsy in March to check the levels of myeloma in the marrow. Normal marrow contains less than 5% plasma cells, my last biopsy over a year ago showed 26% plasma, which is all bad plasma (myeloma cells).
My specialist cannot yet tell whether I still have smouldering myeloma or whether I now have full blown myeloma. From the results and the research I have done I know that I now have full blown myeloma, as myeloma bone marrow is not seen in the MRI scans of normal people or those with just a monoclonal protein in their blood. There has to be a lot of myeloma in the marrow to show up on MRI especially when a contrast injection is not used before the scan. People with myeloma which shows on MRI, have a poorer prognosis (lifespan/outcome) than those that do not show infiltration on MRI.
So it looks like I am at the crossover, not only are my results bad bt I am starting to get symptoms now, I have had 5 night sweats (wake up soaked through) in the last 6 weeks, my back is permanently aching like I have bad toothace or a red hot tennis ball in my lower spine, and I am getting very tired and spaced out and my appetite isn’t quite as good as it was.
So folks it looks like the rot may have set in, and I now have a hell of a fight on my hands. Mutiple Myeloma is not curable, but it is treatable to relieve symptoms and try and slow down the disease progression. Average survival is 5 years with treatment, it is 9 months without treatment !!! Some lucky people have for 10 even 20 years after diagnosis, so its not all doom and gloom and new treatments are popping up all the time. Death in myeloma usually occurs through the medication/treatment no longer having an effect and the usual cause of death is kidney failure, infection or other multiple organ failure. During treatment remission will hopefully be acheived many times and hopefully a long remission will be achieved after a stem cell transplant, which can also be repeated several times, as long as the treatments work the patients survive, so its not all bad news.
I am keeping mentally and physically strong and I am still keeping myself busy with my Interior Design Degree and my mad crazy circus of a family, bless them all and I absolutely refuse to be miserable, I have no time for that and it solves nothing, a strong stress free attitude will help me through and with my family by my side I have the strength of an army. I will update my blog when I get my next results through. Take care xxxxxx
I had a great time working 2008 ARRL Field Day with all my friends in the K4KQ North Carolina Contest Group. I had fun at Field Day 08, we only had 40 CW contacts though, the rig I was on was a Kenwood TS-450S with no filtering at all and that made it really tough!I did get some traffic handling experience as I passed 14 formal messages including the one to the Division Section Manager for 200 bonus points altogether! Had 23 hams show up plus the ARRL Norfolk Division Section Manager Tim Slay N4IB visited and by K4RLD Bob DeWitt, District Emergency Coordinator for ARES Area Thirteen of the Western Branch of North Carolina . We had 2 stations on HF and one station on 6 meters and above. Bradley WZ4C worked south Texas off a LEO Low Earth Orbit satellite and a Hawaii station on 40 meters using a multiband vertical antenna, but we mostly used the wire antennas. A severe thunderstorm stopped operations for about 2 hours. Talk about getting field experience under adverse conditions! It hailed, hard wind gusts blew down trees to the North of us and there was a power outage, but we were on generators anyway so it didn’t stop us after the rain and lightning receded and the 1000 foot loop and the 260 feet dipole hung in there. We sat in the RV and a camper and the RV I sat in rocked from the wind gusts! WZ4I Mark and Bradley WZ4C were prepared and all the equipment tables were covered with tarps and worked well. I made it til 6 AM this morning and was so tired I came home and went to bed.I’m just thankful it wasn’t 95 degrees with 90% humidity! It was 70 last night after the storm that blessed us with much needed 2 inches of rain.
73 de Cliff KU4GW SKCC#652
Sunday, October 05, 2008
Back when I was going through chemotherapy for treatment of multiple myeloma (bone marrow) cancer last year my wife brought a little Chihuahua Feist mix dog home to me and I named him Mickey Mouse. My feet would about kill me with pain caused by peripheral neuropathy, a side effect of the chemo drugs. They would hurt so bad that I would soak them in hot water and then have the wife rub them down in Bengay and they still hurt, but not as bad. Anyway, the first thing Mickey did when she brought him home was he would lie on my feet. He would get them real warm and they would almost stop hurting completely. I told Irene that I thought God sent him to me. Then, not long after I had Mickey he got very sick and would start shaking from side to side and slobbering. He took it by spells. Eventually he got so he couldn’t walk 3 steps without falling down or falling into the wall. I had to physically hold him up to keep him from falling into his water bowl when he drank. I took him to the veterinarian and the vet diagnosed him with hydrocephalus (water on the brain). He told me I could take Mickey to a specialist, but he may not be able to help him either. I didn’t have the money to take him to Charlotte to the specialist, so I prayed for God to heal him. After I had my stem cell transplant in August at Wake Forest University Baptist Medical Center in Winston-Salem and was back at home in recovery, on the 30th day of October they telephoned me and told me all my tests showed I was now cancer free. The very same day Mickey got better and has been better ever since then. He is wide open and I love that little dog. I still think he was a gift from God. He is my best friend. He sleeps with me every night and he is so warm! The cancer I had was multiple myeloma (bone marrow cancer) and according to the Multiple Myeloma Research Foundation it is an incurable cancer. I believe with all my heart that God answered my prayers and that he healed both Mickey and me.
**UPDATE** – MARCH 9, 2018 – It is with much sadness I must report I had to have Mickey euthanized this evening at Stony Point Animal Clinic in Stony Point, NC. He came down with a terrible hacking cough 3 days ago on March 6th that was so bad and loud you couldn’t stand to be in the same room with him! The veterinarian wanted to do a chest x-ray because she said his gums looked grey which was a indicator of a lack of oxygen. She came back and told me one side of his heart was very enlarged and wasn’t pumping right so he wasn’t getting enough oxygen. Mickey also had a heart murmur he’d had his entire life. You could hear his heart murmur without even trying when lying in bed at night in a quiet room. I asked her if that could be the reason he has always had such a bad itching problem and dry skin. He would take his paws and rub the sides of his mouth and cry out in agony from it. She said it’s possible because he hasn’t been getting the right amount of oxygen. The poor little guy has suffered with that his entire life! She told me she could give him up to 10 pills a day to reduce the swelling in his heart, but it could get expensive, money I just don’t have anyway, and even after doing that every day and it may come right back or he may smother to death over the weekend if it didn’t help him so I told her to put him to sleep so he wouldn’t have to suffer anymore. I left before they ethahanized him because I told the vet I wanted to remember seeing him alive and not how he looked after passing away. Mickey was 11 years old and was a wonderful companion to me. After today I’ve made up my mind that after the rest of the dogs I own pass on I am never getting another one because unfortunately God didn’t make them live as long as humans do so getting one and then falling in love with it is just setting yourself up for heartbreak. I’ve had more than my share of that already after going through what I did to defeat stage 3 multiple myeloma and then going through losing my dear wife of 27 years when she passed away at only 48 years old from a pulmonary embolism 6 years ago as of March 24, 2018. I know one thing that’s a fact. God sure has given me more than my share of tribulations in the soon to be 57 years I’ll have been alive on this Earth as of May 10, 2018!
I’ve been taking thalidomide for the past 4 years, and putting up with the gradually increasing neuropathy. The sudden-onset muscle cramping, however, does get downright annoying, especially when one of my super exciting dreams is interrupted by a golf-ball sized muscle cramp hitting in the calf of one leg. An interesting question comes up: does the activity in my dreams (leaping from building to building a la Spiderman) cause the cramp, or does the onset of the cramp influence what I am dreaming? I should mention that I have always had really great dreams – now that I’m 71 years old, it’s the only real excitement that I get. LOL
I will put up with my fingers getting twisted into weird positions. That is merely annoying, especially if I am trying to hold a pen or a pencil. What really hurts though, and what I find the most distressful, is a cramp in the arch of one or both feet just before bedtime. Nothing seems to work – heat, vibration, massage, NSAIDs. For years, I have read about people using tonic water (quinine water) to treat muscle cramping, and I have always scoffed. “How can a miniscule amount of quinine possibly influence muscle cramping?” sayeth I. ” It must be in their imagination!” Well, one evening I was ready to try anything, and found a bottle of quinine water in my larder. Ice in the glass, and glug, glug. Within five minutes the cramping in the arch of my foot was GONE. I believe that my reaction was, “Son of a gun!” or something like that.
The next night, same thing: cramps start, drink a glass of tonic water, cramps stop and I get a good night’s sleep. Great dreams: no cramps in the middle of the night, either. Being skeptical, the third night, I went cold-turkey: no tonic water. At two in the morning, while climbing a hillside carrying my trusty 7mm Remington Magnum on a bear hunt, my leg knotted up with nasty cramp. Sudden-End to a really great dream.
Gentle readers, I am not one to leap to conclusions, but every night for the next 2 weeks I drank the tonic water (yes, I went to the grocery and stocked up on a generic brand, some with lime and some “straight”). No cramps. If I skipped the tonic water, I got cramps. Therefore, I must come to the conclusion that tonic (quinine) water has a miraculous ability to stop and/or prevent muscle cramping caused by long term dosage of thalidomide.
There is an additional benefit. Both my Family Physician and my VA physician advocate taking 1½ oz of spirits, or a glass of wine, before bedtime. (a little ethyl alcohol IS good for the human body). This is a marvelous excuse, then, to imbibe a vodka n’ tonic before climbing into my P-47D Thunderbolt, and zooming off to fight a bunch of Me-109’s at 25 thousand feet.
Best regards, Bob Oberle, Chantilly, VA aged 71, dx 5/02 IgG lamda stage 2A, SCT 3/03, in CR since, thalidomide q36hrs for maintenance.
According to the Weather Underground this morning we are experiencing: Freezing Fog with Active Advisories: Winter Storm Warning, Flood Warning, Special Weather Statement (US Severe Weather), Active Notice: Record Report, Public Information Statement
Just what is freezing fog? This looks like snow to me, but I guess if it is thick enough then you can call it freezing fog. Why not flaking fog? How about falling frozen fog with significant accumulation of fallen frozen fog particulate? Now not a mere 15 minutes later we have freezing sunshine.
I learned on Monday from the lead author of the early December presentation at ASH on GRN163L that yes indeed the Telomerase activity in the bulk tumor fraction of my bone marrow decreased by 78%. Yet another reason which I forgot to mention earlier to party tonight.
“If you’re going to be able to look back on something and laugh about it, you might as well laugh about it now.” Marie Osmond
Marlee is no longer captivated by the scene changes in the Nutcracker Suite. I on the other hand am still in awe of my response to Rev/Dex. I am now in the 90% response range. Every single CBC, CMP, LDH, CRP… is in the normal range except a slight anemia, antibody suppression and an elevated lambda free light chain and related lambda/kappa ratio. (My M-spike is negligible)
The orthopedic surgeon said he didn’t need to see me again. “Go do some strength training on that arm.”
The oncologist said: “No More Dex!!”
It is definitely Party Time Tonight!
I guess that is not as dorky as the Man’s making out in the elevator. Today is another dex day so either I ramble with no point or just stop and move on to some other urgent project which I will abandon shortly after finding an even more urgent project. Oh ya I have a final exam that needs some work.
Sorry, but I don’t have any dorky pictures of Lu and I as the happy couple, The Man’s. That would be Ginger and Bread. What a wonderful event though. So wonderful in fact we are now the proud owners of a new house. It so reminded us of our summer place that we could not pass it up. A couple of students (I assume culinary artists!) started on it about a month ago. She filled the inside with goodies likes cakes, croissants, candles and an old fashioned cook stove. He constructed a cabin worthy of the harshest Buffalo winter storm. BTW if you click on the pictures they link to significantly larger versions there of.
It is bitter cold today. In the teens (-10 C) actually. There is a beautiful blanket of light fluffy snow. A perfect day to stay inside by the wood stove and work on my final exam.
BTW Geron presented interim results of the GRN163L trial at the American Society of Hematology meeting in San Francisco today. I’d like to conjecture that they talked about me as I received the dosing level of 4.8 mg/kg. It is pure conjecture though. There may have been several other patients at that level.
Sorry its been so long, I have been busy with redecorating my new house and working on my Interior Design Degree. I am pleased to say I got A and B grades for my first assignments in my degree so I hope it continues as I would love to put my graduation picture on here in a few years time. I have also started to go to Spanish lessons and I am learning how to paint and draw fairies so I am a busy woman at the moment .
On the subject of my health, I have been feeling ok and my immunoglobulin treatment which I have monthly is keeping the infections under control. All my family have been getting chest infections and ear and throat infections and thankfully I have remained fit and well. Initially I was only supposed to be having six months treatment with the immunoglobulin infusions but it has been extended because it is working so well. Its such an expensive treatment and I am very lucky and grateful that the National Health Service in this country is paying for it for me.
Today I am feeling low, even though I have plenty to keep me busy sometimes I can’t help but get a little down when I think of my future. Although I know I am lucky to be able to do all the things I do and I am in reasonable health and have a lovely family, I cant help being afraid and uncertain of my future.
My specialist said to me on my las monthly visit that she is re-staging me in March 2009, which basically means I am having a bone marrow biopsy, full skeletal survey (x-rays of whole body) an MRI scan an blood and urine tests. The test results will paint a picture of where I am at with this multiple myeloma, I will either be still indolent/smoldering i.e pre-myeloma or I will be full blown stage I, II or III, meaning I will need treatment i.e chemotherapy and maybe stem cell transplant. Hopefully I will still be smoldering and not need treatment.
I asked my specialist a question at my last visit and it has proved to me that you should never ask a question if you are not fully prepared for the answer!!!!! I asked how long on average does it take smoldering myeloma to turn into full blown myeloma requiring treatment? The answer was, because of the trend and pattern of my monthly results, I will definitely require chemotherapy within 5 years. In other words I have less than 5 years before I have full blown multiple myeloma, plasma cell cancer, a blood cancer a form of leukemia any way you put it its the big C the CANCER word .
Today I feel like I am waiting for the inevitable, I have felt very tired and run down in general today and when I feel like this I get low and depressed and start to dwell on my illness. I have my monthly immunoglobulin treatment on Thursday 27th November so its round about this time of the month I begin to worry about my results from last month. I hate it when the specialist approaches me for my results, I am just waiting for those dreaded words, you need to start chemotherapy, you have progressed and now have full blown cancer. I am not over reacting this is my life, every month I may hear those words, this is the cruelest way to develop an incurable disease, you know its coming and your just waiting. I know there are many thousands of people worse off than me and bless them all, but I have a right to feel a little sorry for myself every now and then because I am human.
Until next time, I will carry on with my studying and my hobbies, carry on enjoying family life, carry on looking forward to the warmth of the spring and the heat of the summer, and carry on praying for a cure for multiple myeloma. Bless you all xxxxx