Hi My name is Sammie,
I am so glad I found the Myeloma Beacon. This has really been my guide over the past month. However I am now experiencing something that I cannot find any information about, so I thought I would finally reach out.
I will try to keep this short. I am 42, a mother of 2, and a recent grandmother. I have been sick since Nov 2013. I have been to every kind of specialist -- if the name ends in "gist", I have seen them.
My symptoms were getting worse -- back pain, bladder retention, neuropathy, weight loss, loss of appetite, headaches, muscle weakness, hip pain, balance issues and side pain. Lumbar puncture revealed extremely high lymphs. Emg and nerve study showed damage - legs.
In May my GP sent me to the latest, and my most feared, "gist" -- the oncologist. My blood work turned up with abnormal neoplasms. Bone marrow less than 6.5 percent with deletion of chromosome 20(q), so my diagnosis was MGUS.
However, because of my symptoms, the oncologist sent me off for the bone survey and PET/CT. He said he didn't think we would find anything, but it would give us a good baseline for my checkups.
I saw the oncologist today. The bone survey revealed multiple lytic lesions on the skull and a lucent lesion in femur right greater trochanter.
I am having a skull biopsy in 3-4 different areas next week. If positive, the oncologist says I am at stage III multiple myeloma.
My question is has anyone been through the skull biopsy and if so what was your experience? I would appreciate any advice as my life has quickly turned around within the last few weeks, and really turned today. My oncologist told me to prepare myself and gave me the run down of the treatment plan he would propose.
A little longer than anticipated so thank you for reading and thank you for any advice or words of wisdom.
Sammie
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5 posts
• Page 1 of 1
Re: Skull biopsy for lytic lesions - anyone else had one?
Hi Sammie,
Thanks for your posting and for your feedback about The Beacon. We're glad you've found it to be a useful resource.
We're sorry to hear about all the health problems you've been having and the challenge you've faced in getting the source of the problem diagnosed.
We know that you've asked for feedback from people who have had skull lesion biopsies, but we are wondering whether those biopsies are necessary at this point.
Perhaps you could provide some more information about the tests that you have done so far.
For example, you say that "Bone marrow less than 6.5 percent with deletion of chromosome 20(q)". Presumably, this result is from a bone marrow biopsy. From where was the biopsy sample taken?
Also, have you had any blood or urine work done to measure your serum or urine immunoglobulin (protein, M-spike) levels or your free light chain levels? If so, can you share any of those results with us?
Likewise, if you've had any measurement done of your hemoglobin, blood calcium levels, or kidney health (for example, creatinine levels), that also would be useful information.
The reason we're asking about these things is that there seems to be a disconnect between the fact that you have several lytic lesions based on the skeletal survey, but your bone marrow plasma cell percentage is relatively low (although still above normal levels).
One final question ... The oncologist you are seeing right now. Are they are hematologist/oncologist, a general medical oncologist, or someone who specializes in myeloma and related diseases?
Given that you have lytic lesions that could well be myeloma-related, you probably should consider seeing a physician who specializes in myeloma to really figure out what the source of the lesions is (and, if the lesions are myeloma-related, what to do about them).
Thanks for your posting and for your feedback about The Beacon. We're glad you've found it to be a useful resource.
We're sorry to hear about all the health problems you've been having and the challenge you've faced in getting the source of the problem diagnosed.
We know that you've asked for feedback from people who have had skull lesion biopsies, but we are wondering whether those biopsies are necessary at this point.
Perhaps you could provide some more information about the tests that you have done so far.
For example, you say that "Bone marrow less than 6.5 percent with deletion of chromosome 20(q)". Presumably, this result is from a bone marrow biopsy. From where was the biopsy sample taken?
Also, have you had any blood or urine work done to measure your serum or urine immunoglobulin (protein, M-spike) levels or your free light chain levels? If so, can you share any of those results with us?
Likewise, if you've had any measurement done of your hemoglobin, blood calcium levels, or kidney health (for example, creatinine levels), that also would be useful information.
The reason we're asking about these things is that there seems to be a disconnect between the fact that you have several lytic lesions based on the skeletal survey, but your bone marrow plasma cell percentage is relatively low (although still above normal levels).
One final question ... The oncologist you are seeing right now. Are they are hematologist/oncologist, a general medical oncologist, or someone who specializes in myeloma and related diseases?
Given that you have lytic lesions that could well be myeloma-related, you probably should consider seeing a physician who specializes in myeloma to really figure out what the source of the lesions is (and, if the lesions are myeloma-related, what to do about them).
Re: Skull biopsy for lytic lesions - anyone else had one?
Thank you for your response. It is very much appreciated. My brain feels pretty scrambled right now. Every time I visit the Dr., there is something new that comes up for which I was not prepared.
I am seeing a hematologist/oncologist who specializes in multiple myeloma. He says I am a mystery and has called on several of his colleagues in regard to my case. He has said from the beginning that I do not meet the "standard" for this, which has him and colleagues puzzled. He did the survey, for the baseline and symptoms, and we were not expecting anything to come back. I was ready to go back to the neuro right after the appointment, thinking I would just need to come in every 3 months to the oncologist for blood work. Then BAM!
I did have the 24 hour urine collection, which he said came back all within normal ranges. That is the one thing I do not have a copy of so I am not sure what my numbers are.
The bone marrow aspiration was done in the hip. His comment was that if he were to have taken it from the sternum the neoplasms may have showed a higher reading.
I have had all blood work. I am still trying to figure out what is what since all of this is coming so rapidly. I had a lumbar puncture in March, the only thing that raised eyebrows were the lymphs in the CSF 140%, everything else was normal. High lymphs and symptoms brought my GP and neurologist to the conclusion to send me to the oncologist. No explanation or illness that would have resulted in such a high spike.
I think this is what you are inquiring about, if not please let me know;)
My SPE levels as of 05/07:
Albumin, SPE 4.9
Alpha 1 is .3
Alpha 2 is 1.0
Beta G is 1.0
Gamma G is 1.4
Monoclonal spike - None!
My CBC all within normal with exception of MCH 34.7. I do know that the bone marrow had Lymph spike of 19, if that helps.
I do not see anything related to calcium or Kidney in blood work, but again I may not know where to look. I have 4 packets of blood work. Would there be abbreviations? I apologize for appearing ignorant, this was all so sudden and I am just now starting my research.
I have always been a medical puzzle.
Thank you again for your kind response and for your assistance. It is appreciated more than you know.
Sammie
I am seeing a hematologist/oncologist who specializes in multiple myeloma. He says I am a mystery and has called on several of his colleagues in regard to my case. He has said from the beginning that I do not meet the "standard" for this, which has him and colleagues puzzled. He did the survey, for the baseline and symptoms, and we were not expecting anything to come back. I was ready to go back to the neuro right after the appointment, thinking I would just need to come in every 3 months to the oncologist for blood work. Then BAM!
I did have the 24 hour urine collection, which he said came back all within normal ranges. That is the one thing I do not have a copy of so I am not sure what my numbers are.
The bone marrow aspiration was done in the hip. His comment was that if he were to have taken it from the sternum the neoplasms may have showed a higher reading.
I have had all blood work. I am still trying to figure out what is what since all of this is coming so rapidly. I had a lumbar puncture in March, the only thing that raised eyebrows were the lymphs in the CSF 140%, everything else was normal. High lymphs and symptoms brought my GP and neurologist to the conclusion to send me to the oncologist. No explanation or illness that would have resulted in such a high spike.
I think this is what you are inquiring about, if not please let me know;)
My SPE levels as of 05/07:
Albumin, SPE 4.9
Alpha 1 is .3
Alpha 2 is 1.0
Beta G is 1.0
Gamma G is 1.4
Monoclonal spike - None!
My CBC all within normal with exception of MCH 34.7. I do know that the bone marrow had Lymph spike of 19, if that helps.
I do not see anything related to calcium or Kidney in blood work, but again I may not know where to look. I have 4 packets of blood work. Would there be abbreviations? I apologize for appearing ignorant, this was all so sudden and I am just now starting my research.
I have always been a medical puzzle.
Thank you again for your kind response and for your assistance. It is appreciated more than you know.
Sammie
Re: Skull biopsy for lytic lesions - anyone else had one?
I haven't had a skull biopsy, but I do have 2 lytic lesions in my skull. I would think that a regular bone marrow biopsy would be all that is needed, but maybe your lesions are large and growing and your oncologist wants to see what is going on. Hope all goes well.
-
GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Skull biopsy for lytic lesions - anyone else had one?
Thank you George for your response.
Best wishes for all,
Sammie
Best wishes for all,
Sammie
5 posts
• Page 1 of 1