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Re: Coming late to the party
I'm not going to speculate on what flavor of multiple myeloma you might have since you will see Dr. Valent tomorrow and he has all of your records. It sounds like you were lucky indeed to get an appointment so quickly with a good specialist. Let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Coming late to the party
Hi Judi, Good luck on getting the right treatment for the myeloma. I am sure that Dr. Valent will appreciate you and your daughter having so much background information for him to review also. I hope that once you can start treatments, it will help with the pain and other problems you are having. Please let us know how everything is going for you.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Coming late to the party
At this point, it's really a relief to have a diagnosis and be moving forward. Thank God for this site for information.
More test results are in and it is looking like light chain multiple myeloma, but we'll see. The longer genetic test from the marrow is not back yet. :/
PET scan today - lesions scattered throughout vertebrae starting at T3. Also in hips and pelvis, which explains why walking has become such an issue over the last year or so. No major red flags in organs! Great news there.
I feel better tonight than I have in months. Hopeful. And I owe that to lurking around here, reading personal stories and advice others have shared.
THANK YOU
More test results are in and it is looking like light chain multiple myeloma, but we'll see. The longer genetic test from the marrow is not back yet. :/
PET scan today - lesions scattered throughout vertebrae starting at T3. Also in hips and pelvis, which explains why walking has become such an issue over the last year or so. No major red flags in organs! Great news there.
I feel better tonight than I have in months. Hopeful. And I owe that to lurking around here, reading personal stories and advice others have shared.
THANK YOU
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Coming late to the party
I apologize for the delay in updating. Once again, thank you to everyone who participates in these forums.
It's been a whirlwind since my appointment with Dr. Valent last week. I still can't get over how perfect he is for me. I need the facts and details, and straight forward answers.
Last I checked we were still waiting on FISH. Hopefully, they will have it on Wednesday.
Finally there is clarity and a plan of attack. Right now we're focused on getting everything ready for the start of treatment when I get the approval. A huge relief is that my pain is finally being treated adequately.
Yes, due to the bone damage I will be starting Zometa right away. The PET was worse than I had realized in that regard. My daughter's bridal shower is Saturday, and the oncologist is Wednesday so it will most likely be next week. No way I am taking that 1st dose right before her shower. This medication is the part that scares me most, but once we make it through round 1 we'll know what we are facing.
Due to the bone damage, I am starting the Social Security Disability (SSDI) process. We're also working on my house, some simple adaptations to make the family more comfortable about me remaining here. I have a Cape Cod and the entire upstairs is my bedroom. We're turning that into my sanctuary for the worst days. I tend to plan for the worst while hoping for the best.
I'm blessed to have a wonderful support system, but I have learned quickly to set a buffer zone around the immediate family. I've received some of the most bizarre calls and messages. Also, those 'well meaning' that planned to visit during treatment. I flat out said I don't know how I will react to the medications, but if you can't handle this or that stay away.
Those who have experienced the consuming bone pain may understand this, for the last year or so I felt that I was swirling the drain. Utter exhaustion, excruciating pain About 6 weeks ago when the local oncologist read the radiology report and said there's only 2 small lesions and it may just be degenerative disk, in that moment I thought if this is my life now, I don't want it. Because I did not think I could take one more step.
For me and for those closest to me, who've watched me decline, this diagnosis is a relief. The monster has been named and we can fight it. We're planning the future one step at a time.
It's been a whirlwind since my appointment with Dr. Valent last week. I still can't get over how perfect he is for me. I need the facts and details, and straight forward answers.
Last I checked we were still waiting on FISH. Hopefully, they will have it on Wednesday.
Finally there is clarity and a plan of attack. Right now we're focused on getting everything ready for the start of treatment when I get the approval. A huge relief is that my pain is finally being treated adequately.
Yes, due to the bone damage I will be starting Zometa right away. The PET was worse than I had realized in that regard. My daughter's bridal shower is Saturday, and the oncologist is Wednesday so it will most likely be next week. No way I am taking that 1st dose right before her shower. This medication is the part that scares me most, but once we make it through round 1 we'll know what we are facing.
Due to the bone damage, I am starting the Social Security Disability (SSDI) process. We're also working on my house, some simple adaptations to make the family more comfortable about me remaining here. I have a Cape Cod and the entire upstairs is my bedroom. We're turning that into my sanctuary for the worst days. I tend to plan for the worst while hoping for the best.
I'm blessed to have a wonderful support system, but I have learned quickly to set a buffer zone around the immediate family. I've received some of the most bizarre calls and messages. Also, those 'well meaning' that planned to visit during treatment. I flat out said I don't know how I will react to the medications, but if you can't handle this or that stay away.
Those who have experienced the consuming bone pain may understand this, for the last year or so I felt that I was swirling the drain. Utter exhaustion, excruciating pain About 6 weeks ago when the local oncologist read the radiology report and said there's only 2 small lesions and it may just be degenerative disk, in that moment I thought if this is my life now, I don't want it. Because I did not think I could take one more step.
For me and for those closest to me, who've watched me decline, this diagnosis is a relief. The monster has been named and we can fight it. We're planning the future one step at a time.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Coming late to the party
I met with my local oncologist today and got additional MRI and FISH results.
My left arm MRI was worse than expected, and he'd like me to see an orthopedic surgeon as soon as possible for possible pin placement.
We had thought the FISH results were completed. Alas, he had received another report on February 21, 2017:
200 nuclei examined - 10 produced hybridization pattern consistent with loss of IGH on the long arm of chromosome 14, while 22 cells displayed a loss of one copy of chromosome 13.
My oncologist was concerned and said that both doctors would review and may make additions to current treatment plan. His demeanor is much changed from 6 weeks ago.
I don't understand completely so I made an appointment for next week with my myeloma specialist in Cleveland. The FISH doesn't seem like the worst case scenario, It wasn't on my list of DO NOT WANT TO SEE but I could be wrong.
I don't believe I had shared my PET CT report and current list of bone lesions. This is the list I prepared as a summary for the records I submitted to Social Security.
Lytic bone Lesions detected to date – cancerous ‘holes’ in bones - radiology reports attached
My left arm MRI was worse than expected, and he'd like me to see an orthopedic surgeon as soon as possible for possible pin placement.
We had thought the FISH results were completed. Alas, he had received another report on February 21, 2017:
200 nuclei examined - 10 produced hybridization pattern consistent with loss of IGH on the long arm of chromosome 14, while 22 cells displayed a loss of one copy of chromosome 13.
My oncologist was concerned and said that both doctors would review and may make additions to current treatment plan. His demeanor is much changed from 6 weeks ago.
I don't understand completely so I made an appointment for next week with my myeloma specialist in Cleveland. The FISH doesn't seem like the worst case scenario, It wasn't on my list of DO NOT WANT TO SEE but I could be wrong.
I don't believe I had shared my PET CT report and current list of bone lesions. This is the list I prepared as a summary for the records I submitted to Social Security.
Lytic bone Lesions detected to date – cancerous ‘holes’ in bones - radiology reports attached
- Proximal left humerus cortex – bone survey Feb 14, 2017
- Spinal Lesions in vertebrae – T3, T5, T10, L1, L4, S2 – PET CT scan Feb 8, 2017; Lumbar CT Dec 16, 2016; MRI Oct 31, 2016; MRIs Jan 21, 2017
- BOTH Left and Right Iliac wings - PET CT scan Feb 8, 2017
- Posterior Right Femur - PET CT scan Feb 8, 2017
- Right Acetabulum - - PET CT scan Feb 8, 2017
- Left Acetabulum 3 lesions - PET CT scan Feb 8, 2017
- Multifocal area of hypermetabolic activity in sacrum, iliac wings, and lumbar spine ranging in value from 4.12 – 5.16 SUV values - PET CT scan Feb 8, 2017.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
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