[marty2019Participant]

As I understand it, my clot is too big to be removed surgically due to the structure of the vein with all its valves that stop the flow of blood going the wrong way. The plan is to have the clot dissolve over time, but it seems to be a very slow process. My haematologist said I have about a 15% to 20% chance of having another pulmonary embolism. I was originally on Clexane injections twice a day in the belly. Now, I’m on Apixaban tablets.

[marty2019Participant]

My diagnosis came back very quickly. My haematologist sent me for a bone biopsy. The result for myeloma came back the next day. Having gone through this for the past eighteen months, my advise for anyone diagnosed with myeloma is not to let it define you or rule your life. I just don’t give it much thought. I don’t think it is denial. Sure I have it, but I’m not going to make it the central feature of my life. My view is that if I cannot have quantity (in terms of longevity), I am determined to have quality (in terms of how I enjoy the rest of my life). I’m currently writing up my bucket list. What are the things I would really like to do? There are many things, I always thought about doing in the distant future. Myeloma has got me thinking about doing them now. I feel pity for those whose life ends suddenly (eg heart attacks, drowning, being knocked down by a bus, etc), who don’t get the chance to progress through their bucket list.

[marty2019Participant]

Apologies for the late response. My myeloma diagnosis resulted from an investigation into the formation of one large blood clot in my right leg that still stretches from my groin to my ankle. Part of it broke off and split into three smaller pieces in February 2019. They lodged into my lungs (bilateral pulmonary embolism). My brother is a doctor. He said I was lucky to survive. If the rogue clot had not broken up, it would have killed me. As a result, I will need to take blood thinners for the rest of my life.

[marty2019Participant]

I have been taking Revlimid for about two months so far. My response seems to be the opposite. I don’t have diarrhea when I’m taking it for the 21-day period. Rather, it seems to affect me on the seven rest days between cycles. Even then, it is relatively mild but it comes on quickly. Perhaps, I have not been on it long enough to experience more severe problems.

[marty2019Participant]

I think the general public needs to be made aware that some like us are extremely susceptible to infections and diseases even more so now that Covid-19 is floating around. A lot of people live in their own little world and don’t understand or appreciate how their actions (eg poor hygiene and lack of social distancing) impact on others. I feel that to keep our susceptibility hidden perpetuates this. However, whether someone wants to openly publicise themselves as immuno-suppressed should be their choice. Personally, I don’t care who knows that I am. Only once have I been challenged by someone for wearing a mask. When I explained why, they understood. Since then and until recently, whenever I went out I wore a mask with “Stem Cell Transplant” written across the front. I’m thinking of having some t-shirts made up with such a message on the front.

[marty2019Participant]

Hi Karl! I forgot to mention two of the strangest experiences I had going through the SCT process. First, when they harvested my stem cells, they gave me a drug (can’t remember the name of it) which gave me an extremely intense taste of garlic in my mouth. Really made my eyes water. Reduced in intensity quickly, but it took about two days to completely get rid of the taste. My body also reeked of garlic. Good for keeping vampires at bay 🙂 Second, I normally would crawl over broken glass for a good cup of coffee or a decent glass of orange juice. Almost immediately after having the infusion to kill off my bone marrow (forgot the name of the drug) two days before my SCT, my sense of taste changed dramatically. I could not stand the taste of either. As a result, I became dehydrated in hospital because I found the taste of all liquids absolutely repellant – except for fizzy drinks. All foods also tasted very bland. This lasted about a month. Before I forget, I was also advised by hospital staff to be extra vigilant with my oral hygiene.

[marty2019Participant]

I’m in my mid-fifties and was diagnosed with multiple myeloma around April last year. I had my stem cell transplant at the end of January this year. I found the SCT itself to be a bit of an anti-climax. Fifteen minutes of my stem cells being reinfused through my pikk line then laying in bed waiting for things to happen. I only encountered a few minor problems while in hospital. First, I lost my stamina for a few days that made doing circuits around the ward increasingly strenuous. After a week, I began to recover my strength. Second, diarrhea caused me to lose weight. Even with a lack of stamina, its amazing how fast you can move when you need the toilet. 🙂 Part of the diet plan given to me in hospital was to eat lots crisps, chocolates and muffins and also have lots of fizzy drinks to regain my weight. That was a bonus. Third, low blood counts meant I needed two blood transfusions. That was also ok. I also got an infection from my pikk line. Medical staff got onto that quickly and pumped me full of anti-biotics. Overall, the SCT process was nowhere near as bad as I expected. In fact, I quite enjoyed it. I had my own room with tv and internet access. The medical staff made a big issue about preventing mouth ulcers. I developed a couple of small ones, but they did not cause me any discomfort. Guess I was lucky in that regard. The combination of medications given to me immediately before and after the SCT meant I stopped growing a beard for about three months. That was also a bonus as I hate shaving almost as much as having a beard. The only thing I had a major problem with was the stem cell harvesting process which occurred three months before my SCT. I produced almost triple the amount of stem cells needed. This caused me so much pain in my back and pelvis that I needed to be admitted to hospital. Of course each person is unique, so you will probably have a different experience. Try not to worry, the medical experts know what they are doing. Do as I did; treat the process as a holiday.

[marty2019Participant]

G’day Roger.
It’s about 7:30PM here in Australia. Good to hear from you given the circumstances. I have just finished my third cycle of CyborD chemo. Had a big dose of Mesna, Cyclophosphamide & Filgrastim chemo treatment last Friday that took six hours to go through. Now I am enduring eight days of daily G-CSF injections in preparation for stem cell harvesting. This has left me extremely tired.

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