Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal Gammopathy of Undetermined Significance) 15 years ago. It is an abnormal protein (M protein) in the blood and a precancerous condition to Multiple Myeloma, Lymphoma, CLL etc.
I was diagnosed in October 2021 with CLL, and will be starting treatment with Acalabrutinib in two weeks.
I asked my doctor if Acalabrutinib would treat both my CLL and MGUS. He said CLL makes the MGUS protein and that the treatment should apply to both conditions. He seemed unsure of his answer and said he would include MGUS on future lab testing and then we will know if the abnormal protein (M Protein)/MGUS in my blood is affected by Acalabrutinib.
My questions are:
1. Has anyone been diagnosed with MGUS that progressed into CLL?
2. After treatment for CLL did your MGUS labs improve...for example, your IgA, IgM or M-Spike?
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Luv2Craft
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Luv2Craft, from your description of your conversation with your Dr., I wonder if he/she is a hematologist/oncologist?
I ask because if the Dr. is as vague in what the medicine he is treating you with will do in regard to your specific situation, I certainly understand you posing the question to us.
Please ask the Dr. to give you copies all the reports that has brought your diagnosis of CLL and all blood reports you have from now on. If you can keep a record for yourself to refer to, you can help to monitor and be a partner in your care. We, on this site, like to know as much as possible so we can advocate for ourselves.
I have changed Drs. several times over my CLL history and now have a specialist who knows why he has determined I need treatment, knows what other health problems I have, and will answer questions I ask. If he doesn't know the answer immediately, he knows where to find the answer and will even leave the appt. treatment room to get the answer in his office, to share with me.
You deserve that kind of relationship with your Dr. I know, as I am 81, that historically we have thought that we don't question a Dr., but that we obey their orders. I am not suggesting we need to be pushy or disrespectful, but we need to be up to speed on the information that is relevant to our health issues and be able to have a conversation with the Dr.
If we can't have the conversation that makes us feel safe and secure as to what is going on, if it is at all possible we need to get another opinion from a more knowledgeable or at least more willing to converse, Dr.
The following are FREE resources to you as an American with a diagnosis of CLL:
Resource to explore ir your Drs. being one others have listed as their CLL Drs.
cllady01, thank you for the timely and extensive response. Yes, my doctor is a Hematologist/Oncologist, although sometimes his answers to some of my questions appear to place him as a new doctor...still learning, of which he is not. He's been in this field for over 30 years.
You are very fortunate to have a good doctor. My medical insurance is through the “Exchange” and finding a Specialist was a challenge. Many of them don't accept healthcare insurance through the “Exchange”. Otherwise, I would have already looked for another doctor. My husband has a countdown to his next birthday early next year (2023), when he will turn 65 and qualify for Medicare. For me, my 65th birthday won't come until the end of next year, which seems so far off. But, once we have Medicare, we won't be so limited to Specialists.
Also, thank you for the website links to help me find an expert CLL Specialist and where to go online to ask CLL questions. I was not aware of these valuable resources,but will definitely be using both of them. AussieNeil, has previously informed me about the “CLL Expert” no-cost “Second Opinion” program. I have already applied for it and I am waiting to be scheduled for a video appointment with the CLL Expert, once they retrieve my medical records from my current Hematologist/Oncologist. During my video appointment, I will hopefully have the answers to my questions answered, that my present doctor could not answer. And then I will update both my post and profile with the information. Warmly, Vicki
I need to add, please, when you get the information from any of the resources provided, let us know how you do and keep us in the loop. We need the info you can provide from your individual experience as much as you need any of ours. We are all in this together to support and advocate for each other. Best wishes!
Just wanted to let you know I have received the answer to my question. It was the answer I was looking for 😀. The answer is in a response below written by Jackie (JM954). I have also included her response on my profile page. Thanks again for your responses.
ladyscream, thanks for your quick reply. Now I know I am not the only one with both MGUS and CLL. Although, I was recently diagnosed with CLL, I am beginning to think that I may have had it since 2007 when I was diagnosed with MGUS.
I'm still not sure if these disorders are two conditions or one...as stated by my doctor. I have always thought that MGUS turns into Multiple Myeloma for 1% of the MGUS patients. But I have recently seen online that MGUS can turn into other conditions, including CLL.
If you don't mind my asking, what is the M-Spike on your labs? Back in 2007, my M-Spike was 0.9 g/dL. It slowly increased and decreased over the past 15 years. It is currently 2.5 g/dL. Take care, Vicki.
I have been unable to get the reading of my M spike, the last two blood read outs I requested they were not included , my nurse said the recording was small. It would be interesting to know if Cll caused the Mgus.
My husband was diagnosed with CLL and MGUS at the same time. Currently on watch and wait. My daughter has recently been diagnosed with MS (she is 33) and has just been tested for MGUS. Awaiting results…… cannot but feel there is a connection between these diseases………
I hope your daughter's test results come back negative. Especially, now that I know MGUS is related to CLL. Read Jackie's post below. It contains very valuable information in it. 😀
Both CLL cells and myeloma cells are B cells and capable of producing a monoclonal gamopathy protein, the difference is in the amount of protein produced. CLL cells tend to produce small amounts and myeloma cells can produce huge amounts of protein which can have a bad effect on the kidneys.
If you have a small amount, only a few grams, then it is generally of no concern and almost certainly due to your CLL. If it's a large amount (say 20grams) then really you need a bone marrow biopsy to determine if you also have myeloma. Treatment for myeloma is different to that of CLL.
If yours is due only to CLL then, yes, the protein will reduce as your CLL is treated and brought under control with Acalabrutinib, although Acalabrutinib is much slower than Ibrutinib in working.
Thank you, thank you, thank you 😂. And now I can breathe. I have prayed and asked the lord to heal my blood conditions together with treatment. So, it appears my doctor was right about CLL making the M protein, although he stated he didn't know the first time I asked him and months later changed his answer stating CLL and MGUS are related while appearing unsure of his answer. He kept telling me to let him treat me and I will feel better. But I couldn't see it, since I was under the assumption that I was only treating one condition (CLL) and not the other (MGUS).
I felt my doctor began ignoring my MGUS since he stopped testing and monitoring it, once he discovered I had CLL. Now that I know that CLL medicine will treat both my CLL and MGUS, I feel soooo much better about starting treatment. And the fears I had of developing Multiple Myeloma have subsided. My most recent M-spike was 2.5 g/dl. For years, I thought that once my M-spike reaches 3.0 g/dl, it would turn into Multiple Myeloma.
Again, Jackie, thank you so much for your response to my post, you have made me and my husbands day so much better. 😀
Yes, almost certainly but at a very low level of CLL until it became obvious in 2021.What sort of lymphoma was it? Low grade B cell lymphomas such as follicular or SLL can also produce low levels of monoclonal protein.
I was diagnosed with MGUS 26 years ago which, supposedly, progressed into CLL 4 years ago. Treatment didn’t start until 3 years ago (Bendamustine) but only lasted for 4 months as it didn’t have any effect on the proteins you mentioned. After some discussion and a second opinion my diagnosis was changed to LPL, Waldenstroms macroglobulinemia in particular, and I have been treated with Ibrutinib ever since. Although I have suffered with a whole range of minor side effects I feel better altogether, my bloods are nearly all in range, my bone marrow infiltration has reduced from 90%+ to 10% (taken 7 months ago) and para protein count is now IGM9 & IGG22 down from 11 & 40 respectively. Hope this helps
Thank you for sharing your private information with me and others. It looks like you are doing well. That is my main concern. How will I feel after my blood work is back to normal. I was feeling well prior to my CLL diagnosis, but then my doctor treated me with 40 mg of Prednisone to quickly bring my white cell blood count down. It was at 129000.
He said Prednisone kills cancer cells. It was the main drug used for CLL many moons ago. One week after starting the Prednisone, I felt woozy and sickly. My weight dropped from 120 down to 113 in a one week period of time. I could actually see my muscles wasting away. It was very fighting for me.
I immediately began tampering off the Prednisone. It's been 3 months and I'm still not feeling back to my old self which may be because of the CLL. I will begin Calquence in less than two weeks. Hopefully, I will have few or no side effects and start to feel better soon. Wishing you continued wellness. Vicki 😀
Waldenstroms is another B cell condition that produces a protein as you now know and can look similar to CLL but the cell markers reveal its true identity and that the protein is so much higher than with CLL.
I was diagnosed will CLL in 2018 and it was only when I asked why my igG was high that I was told I also had MGUS. My CLL is indolent and MGUS moving very slowly in wrong direction with an Mspike of 2.2 and abnormal free light chains. The doctor running OxPLoreD study said about 5% of CLL patients also have MGUS. Anne
Thanks for responding to my post. As Jackie stated in her response to my post, CLL and MGUS are related. CLL makes the protein MGUS. So, if you ever need treatment for your CLL, the treatment will also treat your MGUS. I will be starting Calquence in a week or two. And I will be posting the results of my treatment for both CLL and MGUS on my profile page, and this post. Also, I thought my M-spike of 2.5 was high, but Jackie says that's low. 20 is considered high. Best wishes to you.
Anne, thanks for the correction. That's amazing that your MGUS is higher than mine and I am the one with the highly active CLL. I'm not sure what to make out of this. But I am happy your CLL is indolent.
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