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
I couldn’t help but be inspired by Margaret’s post “Purring against myeloma” to snuggle up with Marlee and ponder the health of my bones. I have had significant lytic lesion progression in the past year. One of which resulted in a broken humerus. All this despite Velcade, GRN163L, Zometa and Aredia. Vitamin K2 has recently attacted the attention of nutritionist with regard to bone and heart health, although clear randomized clinical trials have not yet been done. Vitamin K2 is not common in western diets and is therefore difficult to access its affect on bone health via population based studies. There is a correletion in Japanese studies between bone health and those that consume Vitamin K2 rich natto (a fermented soy product). “The reported outcomes of clinical trials, primarily from Japan, that have assessed the effect of MK-4 treatment on fracture risk and bone loss at the spine are
positive overall.” With my “first do no harm” motto and the knowledge that vitamin k2 toxicity is almost nonexistent adding K2 (along with the already present and monitored vitamin D) is a no brainer.
My most recent immunoglobulin treatment went well, but my results weren’t so good.
I have now got hyperviscosity (thick blood) which explains the tiredeness I have been feeling.
My Igg is 42 and my paraprotein is 31, my Haematologist said that chemotherapy usually starts when the paraprotein level reaches 30, but she is still keeping me on a watch and wait because all my other results, like x-rays and kidneys etc. are all ok.
I learnt something at my appointment, that is never ever ask a question unless you are fully prepared for the answer. i asked if and when my smouldering myeloma would turn to full blown multiple myeloma, and my Haematologist said that by the trend of my results, I will definately need chemotherapy within 5 years, scary and not the best news inthe world.
I am being re-staged in March 2009, all my bloods, urine, bone marrow, x-rays and an MRI scan will be put together to stage me, hopefully I will still be smoldering and not any worse. I am keeping busy and upbeat and my haematologist told me to keep occupied, go on holidays and excercise to avoid stress, I took that to mean, do everything while you are well enough to do it. I enjoy my life and I have far too much to do to mope around feeling sorry for myself, my new house isn’t going to decorate itself, and I wont pass my degree sitting worrying, so life well and truly goes on for me.
I am so sorry I have not updated my blog for ages.
I have been doing well on my immunoglobulin treatment, no side effects other than tiredness for a day and a major headache for a day each time. Theres not much to report where my blood test results are concerned, they are fairly stable but are creeping up very gradually. I took a course of preventetive medication to stop my shingles/herpes virus recurring, it worked for a time but this week I have ended up with another outbreak, so I am back on 800mg of Aciclovir 5 times a day. I am going to be taking Aciclovir for life now to prevent the Herpes virus recurring, I am going to be prescribed 200mg 3 times a day for life !!! I have been suffering rib pain for over a week now, my GP said my chest sounds clear but it could be slight pleurisy so he has prescribed me antibiotics just in case. The rib pain has not improved and I am now worried that my smoldering multiple myeloma may have progressed to full blown multiple myeloma. I have been having a lot of leg pain and lower pain lately too. I phoned the Macmillan unit, where I go each month for my treatment and told them about my rib pain and herpes outbreak and they want to see me next week on 24th Sep 2008 to run extra tests, I am due for my next immunoglobulin treatment on 1st Oct 2008. I think my Haematologist will order another bone marrow biopsy to see what is going on and probably a chest x-ray as well as the usual blood and urine tests. I will try and remember to update this blog with the results and outcome of my appointment.
I have written an e-mail to the Cancerbackup Nurses which have now joined forces with Macmillan Cancer Care, I have asked for some advice from them as they are brilliant at helping answer questions and giving support. I will update my blog if I get any info which is interesting.
Be in touch soon xxxxx
New 2009 info:
Our son Rick and his family visited us last week. The twins are 20 months old already! Here they are enjoying the spa and pool. Rick is a battalion chief at San Marcos City Fire Department in San Diego County.
Kierstin(12)enjoying the pool.
Our son Mike is getting close to retiring from CalFire as a battalion chief in 3 short years.Hannah’s(left) middle school graduation photo in June 2009.
Haley( right) is going into her senior year and Hannah is starting 9th grade.
I am feeling a bit older. No wonder……
I am still in complete remission for over 5 years and no treatment for over 2 years.
However, I had radiation, chemo and 3 major surgeries for colon cancer in the past year. Adjuvant chemo from Feb.-June 2009. Oncologist says and the PET/CT scan and all tests show me in complete remission and no further treatment required.
Bighorn Radiation Oncology Center-Rancho Mirage, Ca.
Here is my August 2008 graduation photo with some of the radiation oncology technicians after 30 treatments. They all received a nice bottle of wine each and a huge carrot cake decorated to thank them for the caring , professional experience.
I thought a colorful outfit on my last day was called for. It is brighter than shown in the photo. Heck, I always make things fun……….
Twins are over 2 years old now. Amazing. Eric III (on left) is first grandson
and Caitlyn is 5th granddaughter. They both are a delight.
My Intravenous immunoglobulin treatment went fine today, I am left feeling tired once again but not as bad as last time at the moment.
The good news is my IGg level has dropped from 44.8 to 37. The bad news is my paraprotein ( myeloma burden ) is on the rise and since 2005 has risen from 13 to 29.5. When this level has risen to over 30 and it inevitably will, then my specialist will decide whether to start treatment (chemotherapy) but it will be based on how my general health is and whether there are any other factors to warrant starting treatment.
My MRI scan results show that I have 3 discs causing problems, one is torn and 2 are burning out and dehydrated, these discs are all in my lumbar spine, its not myeloma related and at least I now know why my back hurts.
The caravan renovations are going brilliantly and I am really enjoying keeping occupied and using my interior design skills, I cant wait to take off to spain in my caravan in June.
I accidentally brought two caravans (holiday trailers) on Ebay whoops! I am now using my interior design skills to renovate one of them to put it back on Ebay, I wont make a profit on it, I am doing it purely for a challenge. The other caravan is going to be going on a road trip, we are taking it from Portsmouth in the UK onto a ferry to Biloba (33 hours) in Northern Spain, then we will travel right across to Southern Spain to Denia a (9 hours) and then from Denia to Ibiza in the Balearic Islands of Spain. Once in Ibiza we have found a campsite to leave our caravan on so that we can have family holidays there, it’s only a 2 hour flight from the UK.
I am not feeling too great today, I am a bit dizzy and my legs, hips and back are so painful that I can’t sleep. I have taken Paracetamol and codeine, Tramadol and Ibuprofen but nothing has worked so I am sitting here at 01:48 writing my blog. I have been sneezing as well today so I hope I am not coming down with a bug, I shouldn’t be because of my immune treatment.
I have been busying myself on Facebook as well playing games and talking to friends, Facebook can be quite fun in a goofy kind of way. Catch you all later xx
I had my first infusion of Sandoglobulin IV on 12th March 2008. It is basically immunoglobulins (infection fighting cells) taken from about 20,000 blood donations, its taken from the plasma part of the blood, its heat treated to remove viruses and then feeze dried. At the Macmillan cancer unit it is then mixed with a saline solution and then given to me by intravenous drip. The treatment went very well and the only side effect was fatigue for 2 days. I have to have the treatment each month for six months, my next one is on 9th April 2008. This treatment is a measure to attempt to keep my infections under control, it will not help my Smouldering Myeloma. It is not known whether this treatment will work for me so it is just a trial for 6 months, if it is not effective they will stop it.
I have had an MRI of my spine and I have had a skeletal survey of my whole sleleton by x-ray, I wont get the results until 9th April. These tests are done to monitor my bones as myeloma can cause them to lose density and can cause holes/lesions to form in the bones making them fragile.
My symptoms are still the same achy legs, hips and feet and hot sweats but no new ones have developed so that is good news. Mentally I am coping exremely well and I am doing just fine.