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Patient Question – Post Stem Cell Transplant

Posted on October 22 2009 by Pat Killingsworth | 4,377 views

A new reader, Keith, just asked a great question about his wife’s condition under the comment section of yesterday’s post. I thought I would try to answer his question here:

Hi Pat, new to blog and not quite sure how it works. I have a question re remission after stem cell transplant. I had hoped that my wife would be told she has full remission but she has been told she has partial remission with less than 5% of her cells affected now by myeloma. Her marrow was 100% compromised at diagnosis. I have read in a few places about a “good partial remission” and have some difficulty understanding what that means. Is less than 5% “good” etc. thanks

Thanks, Keith! I’m not quite sure how it is all supposed to work either! Readers may note I try and use correct punctuation and write in complete sentences. I’m surprised I am allowed to blog at all! But at age 53 it just doesn’t feel right to use “u” for you or “i” for I or… Well, you get the picture. I don’t even do that in my e-mails. Speaking of e-mail, if I were Keith I may have e-mailed my question to me instead. My zen-web-master just embedded my e-mail address today into the top graphics of this blog to make it easier to do just that!

On to Keith’s question. Remembering I’m not a physician, Kieth, your wife’s post- transplant condition is not unusual and very positive. Many SCT recipients never fully achieve a complete response or remission (CR) and still go on to live relatively cancer free for two, three or four years–sometimes even longer. Studies seem to conflict over the prognosis (read my last two blog posts about prognosis on my other daily blog, www.HelpWithCancer.Org. Some studies show no difference in outcome between myeloma patients that achieve CR or only get to a very good partial response (VGPR). Others studies seem to contradict this and show achieving a CR is a better indicator of a longer positive response. Remember this: Multiple myeloma is not one type of cancer but many grouped together. Myeloma patients respond in all different ways to the same type of treatment. It is imposible to predict how long her transplant will last. I would say without hesitation this is good news for your wife, especially if her bone marrow was that over-run with myeloma cells. And remember there are many, many new drugs being developed around the clock to help me, your wife and other myeloma patients live longer! Every week, month or year we can hang-in-there is a hopeful, positive thing! Really! My best to both of you!
Feel good and keep smiling! Pat

6 Comments For This Post

  1. Jerry Says:

    I find the best place to ask questions is a public place. The answers are available for review by others. The information is available for others to gain from. If you correspond with Keith by private email your advice is not subject to being checked by anyone. You may be giving him bad advice with no intent on your part. That is what I like about Wikipedia. If someone posts something that is not well founded it generally gets sniffed out. I would recommend Keith ask his questions at a place like the following:
    http://www.acor.org/myeloma.html

    As to Keith’s question. Myeloma cancer cells do give off markers . I would check for these. In most patients, about 85%, a monoclonal protein band is secreted into the blood. These can be measured in the blood with the SPEP (Serum Protein immunoElectroPhoresis) and IEP (Immunofixation ElectroPhoresis) tests. About 15% of the patients secrete light chain proteins (Bence Jones Protein) only (LCO). These can be measured in the blood with a Freelite test. These patients are referred to as non-secretors even though they secrete light chains. There are about 1% that don’t secrete light or heavy chain proteins. Most patients secrete both heavy and light chains. Two heavy chains and two light chains combine to form the whole immunoglobulin protein (5 types – Igg, Iga, Igm, Ige, & Igd). There is a lot of good information on this at http://www.myeloma.org .

  2. Pat Killingsworth Says:

    Hi Jerry-
    What, didn't you like my answer? Wasn't Keith interested in his wife's future, post transplant? I like your detailed info but don't understand how it applies to Keith's wife? (By the way, no offense meant or taken!) Thanks for participating- Pat

  3. Jerry Says:

    Your advice was fine. I was just trying to inform how to check for the progression or status of the cancer. Even though there is a statistical average for SCT patients to have a good remission for a period of time it is prudent to check for the recurrence or relapse of the cancer. Nick had the double SCT and his Little Rock doctor wants him to check his blood every week. It is good for Keith and his wife to hope she has a good response from the SCT since many other SCT patients have had good responses. However, it is also good to realize that there are some patients that have not responded as well to a SCT and be on the alert for a relapse but not to obsess about it.

  4. Pat Killingsworth Says:

    I understand. Very helpful, Jerry! Pat

  5. Steven M. Says:

    I was just doing some research on the internet about the importance of CR in MM. Then I found your blog. From what I could determine, CR is especially important if the patient has abnormal genetic factors such as with chromosome 13. This affects about 13% of MM patients. So for that subset of patients, achieving CR results in longer overall survival and event free survival. For everyone else, achieving CR is not that critical and a very good partial remission is a great result of treatment. I hope this helps, maybe?
    Steve in MN
    Dx 03 Dec 03
    Thal/Dex, auto 29 Sep 04, mini-allo 16 Dec 04,CR

  6. Carol Says:

    I am a new reader, and have received some conflicting advice from my local cancer Dr. and a regional cancer center. My local cancer DR. sent me for an autologus SCT consult, and they want to do a allogenic SCT because I have deletion of Chromosome 13. I'm 53, responding well to velcade and doxil. Local cancer dr feels that's too agressive and wants me to do the autologus SCT. I'm really confused. Please help me clarify this. Thsnks, Carol

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