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Still praying ...

I'd like to ask a question out of curiosity ... Has your husband ever spend time in Springfield, Vermont? The reason I ask is because there seems to be a large percentage of people that have, that got this quite rare type of bone cancer ... At least that is what we discovered ... I have not kept up with it since my Mother died six years ago ...

Oh Tiffany, of course you will be in our prayers..goes without saying. My friends daughter has it and she has gone through the round of chemo and is now on stem cell therapy. She is recovering slowly but surely and things are indeed looking on the bright side. She has a five year old son so is fighting like crazy to keep going for his sake as well as her families.
Our prayers will be ongoing for you both to keep positive thoughts and good vibes.
Love ya
Nan

Sending you and your husband lots of good, healing thought and I will keep you in my prayers!!

My husband gave me a heads up & I prayed abt this situation last night.

I cannot thank you all enough.

I have been reading the sticky on here about dealing with change, and that has been very helpful. I think that's been the hardest part. Neither my husband nor I had much mental adjustment to XPAP. For us, it really did feel like wearing glasses, or using a cane. An adjustment, but not an emotionally big one (for us). This diagnosis has been different. All of the stories about people surviving (and thriving) have been so inspiring, and comforting. They help keep us positive and optimistic. Thank you all, for taking the time to share and pray.

In deep gratitude,

-- Tiffany

My heart breaks for the two of you, Tiffany. It goes without saying that my prayers will be with you and your husband for a speedy and complete remission. (((HUGS)))

Suzanne

What is your husband's name? We will certainly be sending out a powerful dose of love and prayer for a great recovery. Miracles live... even my old cynical eyes have seen them happen. Keep the faith

Sir NoddinOff wrote:What is your husband's name? We will certainly be sending out a powerful dose of love and prayer for a great recovery. Miracles live... even my old cynical eyes have seen them happen. Keep the faith

His name is Edward. And thank you. We are committed to doing everything humanly possible to fight this, and that includes keeping faith in all that is divinely possible!

God is the great healer. His will prevail. Keep the faith!

Shauna

Hi to you both.

My thoughts are with you, but you will find strength.

I have been through 2 stem cell transplants, the last in March and I was lucky to have an identical match.

Not easy, but somehow you manage. The hospital will take full skeleton xray, ct and mri, also bloods and a bone marrow biospy. They can carry out gene test. This will help decide the treatment type. In my experience steriods, chemo tablets and now velcade (now by injection). I also received biphosphanate drip (later tablet form) for my bones. This goes on for many months and discussions continue whether to complete the process with a stem cell transplant, using your own cells.

Everyone is different and you may not need treatment right now. I hope that is so.

MM was found in my skull, backbone, shoulder and right rib and I have Bence Jones type which isn't great for my kidneys.

I saw my son graduate this year and without all the treatment I wouldn't have been here!

The Drs dont have all the answers, the drugs are new, I have found it helpful to find out as much as I can, so I can ask questions and understand (not all the time) the explanations. I know some people prefer to leave it to the Drs and that OK too.

I hope this helps.

Andi

Andi M wrote:Hi to you both.

My thoughts are with you, but you will find strength.

I have been through 2 stem cell transplants, the last in March and I was lucky to have an identical match.

Not easy, but somehow you manage. The hospital will take full skeleton xray, ct and mri, also bloods and a bone marrow biospy. They can carry out gene test. This will help decide the treatment type. In my experience steriods, chemo tablets and now velcade (now by injection). I also received biphosphanate drip (later tablet form) for my bones. This goes on for many months and discussions continue whether to complete the process with a stem cell transplant, using your own cells.

Everyone is different and you may not need treatment right now. I hope that is so.

MM was found in my skull, backbone, shoulder and right rib and I have Bence Jones type which isn't great for my kidneys.

I saw my son graduate this year and without all the treatment I wouldn't have been here!

The Drs dont have all the answers, the drugs are new, I have found it helpful to find out as much as I can, so I can ask questions and understand (not all the time) the explanations. I know some people prefer to leave it to the Drs and that OK too.

I hope this helps.

Andi

Andi, it helps more than I can express.

His MM was caught very early, not yet stage I (they call it smoldering). His full body x-ray came back clean, no damage/tumors/pitting, just a little reduction in overall bone density. But his kidney function is impaired, down to about 75% function (that's how we discovered this). He had an excess of kappa light chain protein (monoclonal gammopathy) in his urine. The bone marrow biopsy showed the early MM.

He is starting on Revlimid in the next week or two, and he'll be getting weekly subq injections of velcade/dex (the steroid). He'll also be doing the biphosphanate drip monthly. Can I ask: what was your experience with these drugs? Was there a lot of exhaustion? Pain? I want to be prepared to support him through anything there is to come.

I am a scientist by trade (though I'm a PhD, not MD), and my department contains a lot of stem cell researchers working on these types of things. But it is NOT my area of expertise. I find a lot of comfort trying to learn everything there is to know about this. Information calms me down. If you have any resources you've found particularly useful, I would love to know.

Thank you so much,

-- Tiffany