Wow, it has been very very long since I last posted. I tend to start posts but never complete them, so I have several incomplete blogs that are just sitting there.
Where do I start? I graduated from college last June! My dad was so close to missing it. A week or two before my graduation, he got pneumonia and spent almost a week in the hospital. I was extremely devastated! College was definitely not a walk in the park for me, in fact, it was the hardest experience of my life. Our family has been through so much, I just desperately wanted my parents to watch me walk across the stage. I wanted them to be proud of me and witness one of my life accomplishments. Thankfully, he was discharged a few days before and got the clear to attend. Soon after graduation, I moved home and started a new job. It's almost been 10 months since I first started! I work in Breast Oncology as a clinical research coordinator and I enjoy every minute of it. I feel so blessed to have this amazing opportunity. I seriously have the BEST colleagues anyone can hope for. They are very understanding of my situation and allow me to take time off to attend my dad's appts whenever I need.
Now about my amazing and inspirational father! I had to look back on where I left off... so here it goes. Right after transplant he continued to receive platelet transfusion weekly for a month or two, and finally reached 30 before they gave him the OK to stop. When he hit 50, everyone was so excited and that is when he got his vaccinations. Itt took about 8 months! The nurses nicknamed him the platelet man! As of last month, his platelets hit 100!! It took 20 months post transplant and open heart surgery to hit 100. Besides platelets, his hemoglobin is over 12, the best it's ever been since diagnosis.
My first post ever was about the possibility of relapsing from transplant only 3 months later. To be honest, one of the reasons why I am reluctant to update is that I was afraid that I would jinx his results. For some reason, I feel incline to write about it because I know reading other people's stories helped me immensely. In short, his m-spike remained stable ranging from 0.2 to 0.4 and now 0.6. In fact, we just got back from his appointment with his hem/onc, and for the last two months his m spike was 0.6. I was extremely nervous because last month's m-spike was 0.6 and it's the highest since transplant. My dad's myeloma labs do fluctuate, so I am still hoping and praying it will fluctuate downwards. His doctor did not seem worried, he is actually pretty pleased with my dad's progress and told me not to be so nervous next time (easier said than done). He said there are 3 types of patients after transplant, people who achieved complete remission, people who had great response and the disease becomes slow growing, and people who do not respond to transplant at all. He said my dad is the second type, in which, his disease is stable and slow growing. We all know that he will need to be treated someday, but he said it can be in 3 months, 6 months, or even years. I asked about my dad's treatment options in the event that he does need treatment, and he said there are many options and even newer drugs (pom and carf) on their way to FDA approval. I think that is the most important to myeloma patients, having treatment options and responding to them. He also added that if he hits 3 years treatment free, he would feel comfortable with doing another auto SCT. Even though I am not thrilled and scared that his m-spike is 0.6, we came out feeling ok. I pray that my dad's m-spike will stay the same or, even better, DECREASE. I hope he hits at least 3 years treatment free, so his doctor feels comfortable with another transplant.
Did you notice I said open heart surgery? Yes, my dad underwent a mitral valve repair 11 weeks ago!!! I don't know if I mentioned in the previous posts but my dad had a pretty severe case of mitral regurgitation. My family and his medicine team decided that the best time to undergo this surgery is now since his myeloma is fairly stable and in general good health. At the time of surgery, his platelets were only 75. Keep in mind that any big surgical intervention requires platelets of at least 100, but his surgeon felt comfortable with the surgery. Before surgery, we were not sure whether he was getting a repair or replacement. In some cases, it is difficult to know whether a repair or replacement is appropriate. Again, we are extremely blessed to have amazing doctors. Blood products were reserved and ready if he needed it, and of course, he did. He was in the hospital for a total of 5 days, 24 hours in the cardiac ICU and the rest in a regular cardiac floor. PRETTY AMAZING HUH? His cardiologist said his recovery was one the smoothest and fastest case he has seen.
I am grateful for everyday with my dad and family. I am grateful that my dad is able to live a "normal" life for so long and continue to do so. I am grateful for WONDERFUL DOCTORS.
Lastly, HAPPY BIRTHDAYS DAY, DADDY! AND to all the fathers out there.
P.S. I apologize for a lengthy post!
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This is great news, and I am sure having a new valve will help keep him in a management phase of MM. Ask about using curcumin to augment his treatment as that is supposed to help keep the MM down, according to some research. (See Margaret's blog for more info.)
ReplyDeleteGood to hear that things are generally on an upswing with work, family, etc., for you and thanks for checking in with us here in MM blog world!
Hey guys I have been involved with a product called TBL-12 and thought it may be of interest other people with MM. TBL-12 is currently involved in two clinical trials assessing the value in using the product to treat Multiple Myeloma. There are more studies being planned to target other types of cancers and immune system related diseases.
ReplyDeletehttp://www.tbl-12.com/clinical-trials
A recent abstract published in Blood Journal which has shown some fantastic results when taking TBL-12 with traditional treatment (Velcade). The details of the abstract are:
http://www.tbl-12.com/tbl-12-research-papers
TBL-12 is available for sale over the Internet so everyone who is interested in the product can try it out for 90 days at no risk. In the past TBL-12 have only had the product available for those in the clinical trials or who have contacted them.
TBL-12 has been available since 1981 without any reported toxcity, interactions or side effects. It is basically a food supplement.
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