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Lady Di
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Posted: Mon Oct 6th, 2008 07:07 pm |
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For the past six months I have gone from being told I probably have MM to lymphoma to lung cancer and back to MM or metastatic disease. It all started with an MRI to determine why I was having increased lower back pain (14 yrs of on-off pain). The results showed the appearance of abnormal bone marrow, along with other age related findings. I got a second opinion from Stanford and the radiological report was the same- MM or mestastes. I have had a bone marrow biopsy, aspiration, another MRI, 2 CT's, full body bone scan, and numerous blood and urine tests. All tests have come back negative. My question is- Has anyone else had a similar beginning to an MM diagnosis. I can't help thinking that I am at an early stage of MM. The two oncologists that I have seen do not know what to think. Their advice at this point it to follow through with 6 month MRI, and blood and urine tests. If there is anyone out there with a similar story I would greatly appreciate hearing from you?
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wheatley2992
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Posted: Tue Oct 7th, 2008 12:47 pm |
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The only two tests that I can thing of that might help is a pet scan and a freelite blood test. My wife had problems at the beginning as well and her MM was advanced and aggressive. Continue to push until there is an answer.
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Lady Di
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Posted: Tue Oct 7th, 2008 05:54 pm |
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Thank you for your reply and I am sorry about your wife.
I have had a freelite blood test and it was negative. I asked the doctor about a Pet scan and he said that I needed a diagnosis first. I am going for a second opinion at Stanford in a couple of weeks I will ask their opinion on Pet scan. Did your wife have all the other tests that I mentioned (MRI, CT, bone marrow biopsy and aspiration) and where they all negative? Did she also feel perfectly fine in the beginning?
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Annick
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Posted: Tue Oct 7th, 2008 10:46 pm |
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I'm a bit confused by your story. I presume that since the initial possible diagnosis was either MM or another metastatic cancer, the initial MRI must have shown some bone lesions, which are both common in MM and metastatic solid tumors. The second radiological study at Stanford confirms this, as you stated, so it appears that you've got two tests that indicate MM or metastases. It depends on how extensive the blood work you had, but it is quite possible that limited blood work wouldn't indicate any abnormalities indicative of myeloma. It is also possible that you are in that small percentage of patients that has non-secretory myeloma, which means that there is no monoclonal gammopathy present in the blood or urine.
My concern is that you have two radiologic reports (based on your description below) that confirm that you either have MM or a metastatic cancer, so it doesn't seem wise for your physicians to take a "wait and see" approach. If I were you, I would push for a definitive diagnosis, even if this means going to yet another clinic or cancer hospital. The cost of follow-up only every 6 months may be too great if you have a condition that needs immediate attention.
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Lady Di
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Posted: Tue Oct 7th, 2008 11:55 pm |
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The MRI's showed abnormal looking bone marrow and two lesions, one on the sacrum and one on the pelvis. Bone Scan revealed no activity. I have pages and pages of blood test results from Stanford- all negative. Bone marrow biopsy and aspiration were also negative. I have absolutely no signs or indication of MM other then MRI; I feel perfectly healthy. I'm puzzled as are my doctors. They say they have never seen this set of circumstances. Even if I have non-secretory MM they said there would be evidence in the marrow biopsy and aspiration.
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Annick
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Posted: Wed Oct 8th, 2008 02:41 am |
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| It's possible that your bone marrow aspirate and biopsy was negative because you have very focalized myeloma, so if the tech/MD hit in a non-myeloma spot, the results would be negative. The real tell-all would be a fine needle aspirate of one of the focal lesions. Have they done something like that? And would you be interested in having our physicians review your records? You could fax them to us. Just let me know.
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Lady Di
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Posted: Wed Oct 8th, 2008 04:17 am |
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Thank you for following up with me.
My biopsy and aspiration was taken from the illiac crest and definately not with a fine needle. I'm not sure what you mean by focalized myeloma, but my marrow is described as "...diffusely heterogeneous bone marrow signal abnormalities..." An earlier member mentioned freeLite chain test; I went back and looked at the results and they do appear abnormal to me, but I was told the findings were normal- Kappa Lt free 10.10 (normal), Lambda Lt free 4.22 (low), and ratio 2.38 (high)??? I have another appt at Stanford, Friday after next, for a 2nd opinion on 2nd MRI and bone scan. They are redoing all blood and urine tests. I would love even another opinion, but I don't think my insurance would allow for it. I could definetly check in to it. What do you think?
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Annick
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Posted: Wed Oct 8th, 2008 02:45 pm |
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| Clearly we cannot treat you without seeing you, but I meant that I could have our physicians review your records as an extra set of eyes. It wouldn't involve insurance and would be done as a courtesy to you.
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Lady Di
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Posted: Wed Oct 8th, 2008 06:42 pm |
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It would be a great relief to have another set of knowledgable eyes review my information. Let me know where to send reports; I could get them all together and send tomorrow. Thank you very much.
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DougC
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Posted: Tue Oct 14th, 2008 03:14 am |
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Lady Di
Initially the Ortho side of the medical community was telling me the same thing. They were searching for the primary cancer. My blood work wasn't pushing them towards MM at all....everything looked good. However, once they took a biop of the tumor hanging out on my spinal cord, they had their beast. They followed the biop up with other tests and found faint lambda bands. Since the tumor was crashing my spinal cord, we had no choice but to jump right in to the arena and choose swords. Thankfully the Tricot family had recently arrived at the Huntsman...they saved my life.
Hope the Huntsman is able to help you. I know my wife and I were very frustrated and the stress was intense as the Ortho side pulled was from one cancer to another.
Best to you and your family
Doug
Last edited on Tue Oct 14th, 2008 03:16 am by DougC
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Lady Di
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Posted: Sat Oct 18th, 2008 05:11 am |
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DougC,
Thank you for your concern. You are one of the main reasons I joined "Myeloma Chat." Your comments and responses to others seem intelligent and heartfelt.
Stanford is reviewing all my films and re-doing all my blood and urine tests. Preliminary reports are good and I am encouraged. Annick has also, graciously, agreed to have my records reviewed. It is so nice to know there are people out there who care.
Thanks again DougC! I wish you the very best. Keep sharing your wisdom, it helps.
Lady Di
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DougC
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Posted: Sat Oct 18th, 2008 11:28 pm |
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It sounds like you're in good hands Lady Di. Please keep us informed on how things go. I wish you and your family the best. If I can answer any questions or offer opinions, feel free to ask.
Take care
Doug
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