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Re: A good fight? Or not?
I also tried to halt progression desperately. I tried pterostilbene, curcumin, fish oil, black seed oil, quercetin, apeginin, etc., etc. in an attempt to halt progression over a 7 month period. Unfortunately, the plasma cells just kept multiplying viciously to the point where I had a pulmonary embolism and my hemoglobin in the tank for a 50 year old guy----last year when I was told I had SMM in 8/11, it was 14.0+----now it is under 10.0. I certainly don't want to start treatment now, and I wish it were the year 2022 and there were a one shot cure, but I don't have that luxury to watch and wait anymore and curcumin, etc., just didn't work out for me. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: A good fight? Or not?
Hi Arthurg,
I understand how you feel about palliative care when you first hear this news. There is just so much scary stuff we hear about cancer looong before it smacks us in the face, that the news is just too overwhelming to deal with. We want to go back to the day before we heard the news and realized life had dealt us a tough blow. It is OK, to do that. It is OK to look for other means to manage your diagnosis...I call it the denial and pity party phase. I think we all go through it. I know I did.
I did that for about a week to ten days, and then I shrugged if off knowing I was not going down without a fight. That is when I began to earnestly scour the literature and find out what could be done. Doing that made me feel a lot better because I learn more about the disease process and I learned there were new drugs on the market that would not make me feel sick as a dog, or look all emaciated like a cadaver. That meant a lot and it fueled me to pursue the very best and cutting edge EFFECTIVE therapy that was available. That meant identifying who the myeloma experts were and not just the local oncologist who treats multiple types of cancers and few myeloma patients since it has a low incidence.
You gave some test values but not a free light chain (FLC) test. One indicator that is used to show that a patient is moving from smoldering to myeloma is the FLC.. Have you had one of those? If not, you may want to get one as it is highly predicitive of how rapidly you are moving from smoldering to myeloma.
You mentioned you have anemia. Anemia is a result of the myeloma cells crowding out your normal RBC's in the bone marrow that carry oxygen to the rest of your body along with hemoglobin. So, you are likely feeling quite tired. I don't know if anyone has quite figured out what the critical mass is for the myeloma cells to start eating bone, however I suspect it is chromosomal changes that make the myeloma cells more aggressive and proliferative as they attach to the stroma of your bone marrow and start eating away. Myeloma is a sneaky stealth disease it builds up all it's forces outside the fort, troops, missile launchers, tanks, etc..before it attacks. All the time it is amassing its arsenal and overwhelming troop strength, you have no clue, no symptoms..other than a little fatigue..until one day a bone breaks...and lo and behold..the tests show there is a massive army attacking your bones, and you had no clue.
All of which is to say believe it or not you are lucky to have caught the disease process early. I have to concur with Smah and Terry go get a second opinion. You did not mention what part of the country you are in but the NIH is on the east coast (right outside DC) and Dr. Langren has a smoldering study which he will likely recommend if you do not need therapy at this time. He is not just a world class expert but an exceptional human being as well who will answer all your questions and put your mind at ease.
Keep your chin up and you might want to also know the reason so many of us are now choosing chemotherapy is because it is far less toxic than it has been in the prior decade. Those of us diagnosed in the last two years do not even have to suffer the peripheral neuropathy that was the primary side effect of the best therapy less than 2 years ago. You can trust none of us were chomping at the bit or raising our hands either to have drugs pumped into us. We simply realized
that it offered us the best alternative ALONG WITH quality of life.
I hope you pursue that second opinion, get therapy if needed and before you know it, you will look back on this time as a fork in the road.
Sometimes we just need a little time to wrap our minds around the problem, process it and then move forward.
You can't go wrong getting a second opinion. Nor going to NIH.
Wishing you the best,
suzierose
I understand how you feel about palliative care when you first hear this news. There is just so much scary stuff we hear about cancer looong before it smacks us in the face, that the news is just too overwhelming to deal with. We want to go back to the day before we heard the news and realized life had dealt us a tough blow. It is OK, to do that. It is OK to look for other means to manage your diagnosis...I call it the denial and pity party phase. I think we all go through it. I know I did.
I did that for about a week to ten days, and then I shrugged if off knowing I was not going down without a fight. That is when I began to earnestly scour the literature and find out what could be done. Doing that made me feel a lot better because I learn more about the disease process and I learned there were new drugs on the market that would not make me feel sick as a dog, or look all emaciated like a cadaver. That meant a lot and it fueled me to pursue the very best and cutting edge EFFECTIVE therapy that was available. That meant identifying who the myeloma experts were and not just the local oncologist who treats multiple types of cancers and few myeloma patients since it has a low incidence.
You gave some test values but not a free light chain (FLC) test. One indicator that is used to show that a patient is moving from smoldering to myeloma is the FLC.. Have you had one of those? If not, you may want to get one as it is highly predicitive of how rapidly you are moving from smoldering to myeloma.
You mentioned you have anemia. Anemia is a result of the myeloma cells crowding out your normal RBC's in the bone marrow that carry oxygen to the rest of your body along with hemoglobin. So, you are likely feeling quite tired. I don't know if anyone has quite figured out what the critical mass is for the myeloma cells to start eating bone, however I suspect it is chromosomal changes that make the myeloma cells more aggressive and proliferative as they attach to the stroma of your bone marrow and start eating away. Myeloma is a sneaky stealth disease it builds up all it's forces outside the fort, troops, missile launchers, tanks, etc..before it attacks. All the time it is amassing its arsenal and overwhelming troop strength, you have no clue, no symptoms..other than a little fatigue..until one day a bone breaks...and lo and behold..the tests show there is a massive army attacking your bones, and you had no clue.
All of which is to say believe it or not you are lucky to have caught the disease process early. I have to concur with Smah and Terry go get a second opinion. You did not mention what part of the country you are in but the NIH is on the east coast (right outside DC) and Dr. Langren has a smoldering study which he will likely recommend if you do not need therapy at this time. He is not just a world class expert but an exceptional human being as well who will answer all your questions and put your mind at ease.
Keep your chin up and you might want to also know the reason so many of us are now choosing chemotherapy is because it is far less toxic than it has been in the prior decade. Those of us diagnosed in the last two years do not even have to suffer the peripheral neuropathy that was the primary side effect of the best therapy less than 2 years ago. You can trust none of us were chomping at the bit or raising our hands either to have drugs pumped into us. We simply realized
that it offered us the best alternative ALONG WITH quality of life.
I hope you pursue that second opinion, get therapy if needed and before you know it, you will look back on this time as a fork in the road.
Sometimes we just need a little time to wrap our minds around the problem, process it and then move forward.
You can't go wrong getting a second opinion. Nor going to NIH.
Wishing you the best,
suzierose
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: A good fight? Or not?
Before I was diagnosed with multiple myeloma (too three long years of feeling like crap, and many doctors telling I was healthy) I ended up going to a Naturopath out of desperation. They told me I had "inflammation, food allergies, and adrenal fatigue". I had skin rashes, hives, upset stomach and many other symptoms, like vertigo, migraines, weakness etc. etc. I did an "exclusion diet" (no gluten, dairy, red meat etc), took a lot of supplements including querctin, herbal tinctures, and vitamins. Costs a lot of $$$! Not just the supplements, but the follow up appointments. After about 6 months I did not feel it was getting anywhere and stopped. Now I know the issue might have been "inflammation", but if you don't treat the cause of the inflammation (the underlining multiple myeloma) and only treat the symptoms it is not going to get better. When I finally started chemo I was quite sick, and had hemoglobin of 80, chest pains, fainting etc. They could not give me blood since I had Hyperviscocity syndrome, and were worried I was going to have a clot so I was on blood thinners for a weak until I started chemo. The first cycle of Velcade dropped my M protein by about half! Amazing! So grateful to my doctor at the time, and the hospital for finding a way to grant me access to this drug, since it was not yet approved for fiontline treatment where I live.
Don't give up without trying. Some of the treatments are easier then you think. The side effects can be managed, dose can be adjusted etc. etc.
Don't give up without trying. Some of the treatments are easier then you think. The side effects can be managed, dose can be adjusted etc. etc.
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Anonymous
Re: A good fight? Or not?
Hi Arthurg
I'll make this short. I concur with Everyone about the NIH. I am in the Smoldering study and going there was a wonderful experience. Dr Landgren is Amazing in everyway. You are more than just a number to him as his patient. You won't be disappointed. I'm from the Midwest and they do reimburse for some of your costs for Travel and Lodging if you qualify for the study. If nothing else you still get a top notch second opinion and it's Free to walk in the door.
Good Luck
Art
I'll make this short. I concur with Everyone about the NIH. I am in the Smoldering study and going there was a wonderful experience. Dr Landgren is Amazing in everyway. You are more than just a number to him as his patient. You won't be disappointed. I'm from the Midwest and they do reimburse for some of your costs for Travel and Lodging if you qualify for the study. If nothing else you still get a top notch second opinion and it's Free to walk in the door.
Good Luck
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
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