Hi All,
I'm in the UK and Initially was diagnosed with multiple myeloma in October 2016, I was treated with cyclophosphamide, thalidomide and dexamethasone (CTD), six 3-week cycles, and I achieved complete remission in February 2017, followed by radiotherapy to my left pelvis in March. This caused radiation colitis in June 2017 and I had my sigmoid colon removed, resulting in 2 stomas.
At initial presentation / diagnosis, my hemoglobin level was 7.5 and I needed a transfusion. Up until June 2017, my hemoglobin level was rising, up to about 12.6, but since then it has been dropping and it is now down to 8.2.
As can be seen, this is a drop of 4.4, albeit over a period of about 8-9 months and according to guidelines might indicate a relapse.
I've had no paraprotein since remission started and bloods are good except for the ones that indicate anaemia. I've had no bleeding or bruising. I was going to have a having colonoscopy to check my GI tract, but a stricture meant they couldn't see more than a couple of centimetres.
I'll obviously find out for definite when I have my 3-monthly check up in May, but in the meantime, I'd be interested in the opinions of the members here as to whether they think I might be relapsing.
Caveat - Such is the nature of my cognitive impairment that I'm unconcerned about having cancer or any consequences; nothing anybody can post can have a negative effect. I'm not after an Internet diagnosis, just interested in people's opinions. I appreciate the depth of knowledge and the general ambience here in the forum.
Best regards,
Taff
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8 posts
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: So, am I relapsing?
Hi Taff,
That's quite a drop in your hemoglobin level. How are you holding up? I would think that you'd be experiencing quite a bit of fatigue.
Can you tell us more about what is going on with your test results? For example, what has happened with your serum free light chain results (kappa and lambda, with units or reference range, and ratio), your calcium level, and your white blood cell counts?
That's quite a drop in your hemoglobin level. How are you holding up? I would think that you'd be experiencing quite a bit of fatigue.
Can you tell us more about what is going on with your test results? For example, what has happened with your serum free light chain results (kappa and lambda, with units or reference range, and ratio), your calcium level, and your white blood cell counts?
Re: So, am I relapsing?
Hi Terry,
Certainly am fatigued and have been since diagnosis. I've been anaemic, quite often previously, as I had rectal bleeding for many years, since about 1980, due to hemorrhoids and a rectal prolapse. It's been life threatening a couple of times, as low as 60/65.
I've had no bleeding though, since I had my sigmoid colon removed seeing as toileting is done via bag now, rather than rectum. Having the stomas has made me much better off bowel-wise, and I've no intention of getting things reconnected.
The anaemia now though exacerbates the cognitive impairment due to chemo brain. I've no memory, cannot think in the abstract or plan, and have trouble finding the words I need when speaking. Not negative though, it means that I literally live in the moment, and I'm incapable of worrying or pondering on stuff.
As to the bloods, I get a full blood count every month, prior to my Aredia (pamidronate) infusion. It's a biphosphonate. I only get the light chain tests every 3 months, and that's not due until mid / late May.
White blood cell count is 7.5 with a ref range of 4 - 11
Platelets are 346 with a ref range of 140 -450
Red blood count is low at 4.24 with a ref range of 4.4 - 6
Hematocrit is low at 0.27 ref range 0.38 - 0.51
Mean corpuscular volume is low at 64.6 ref range 80 - 100
Mean corpuscular haemoglobin is low at 19.3 ref range 27 - 33
MCH concentration is low at 299 ref range 320 - 370
Red cell distribution width is high at 19.5 ref range 11.5 - 15.7
All the above are signs of anaemia
Total protein is low at 59 ref range 60 - 80
Globulin is low at 18 ref range 22 - 32
Calcium is mid-range at 2.27 ref range 2.18 - 2.62
The few other results are all within range.
I think a haemoglobin level of 8 or below will trigger a transfusion. My next bloods will be done on 3rd May and I'll get the full amount of tests that I get for my 3-monthly check.
Thanks for the reply.
Taff
Certainly am fatigued and have been since diagnosis. I've been anaemic, quite often previously, as I had rectal bleeding for many years, since about 1980, due to hemorrhoids and a rectal prolapse. It's been life threatening a couple of times, as low as 60/65.
I've had no bleeding though, since I had my sigmoid colon removed seeing as toileting is done via bag now, rather than rectum. Having the stomas has made me much better off bowel-wise, and I've no intention of getting things reconnected.
The anaemia now though exacerbates the cognitive impairment due to chemo brain. I've no memory, cannot think in the abstract or plan, and have trouble finding the words I need when speaking. Not negative though, it means that I literally live in the moment, and I'm incapable of worrying or pondering on stuff.
As to the bloods, I get a full blood count every month, prior to my Aredia (pamidronate) infusion. It's a biphosphonate. I only get the light chain tests every 3 months, and that's not due until mid / late May.
White blood cell count is 7.5 with a ref range of 4 - 11
Platelets are 346 with a ref range of 140 -450
Red blood count is low at 4.24 with a ref range of 4.4 - 6
Hematocrit is low at 0.27 ref range 0.38 - 0.51
Mean corpuscular volume is low at 64.6 ref range 80 - 100
Mean corpuscular haemoglobin is low at 19.3 ref range 27 - 33
MCH concentration is low at 299 ref range 320 - 370
Red cell distribution width is high at 19.5 ref range 11.5 - 15.7
All the above are signs of anaemia
Total protein is low at 59 ref range 60 - 80
Globulin is low at 18 ref range 22 - 32
Calcium is mid-range at 2.27 ref range 2.18 - 2.62
The few other results are all within range.
I think a haemoglobin level of 8 or below will trigger a transfusion. My next bloods will be done on 3rd May and I'll get the full amount of tests that I get for my 3-monthly check.
Thanks for the reply.
Taff
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: So, am I relapsing?
You've really been through the ringer, Taff. I'm impressed at how well you're holding up.
Too bad you don't have any recent free light chain results. They would really help in figuring out what might be going on.
Let's set aside for now any results that are related to your anemia. Those results certainly suggest that something could be going on with your myeloma. However, given your history of anemia, it's not clear how reliable a signal that set of lab results is.
So if you look at your white blood cell, platelet, and calcium levels, have they been changing much over the past 3-6 months? Although test results from a single point in time can be helpful, it's more helpful when you can look at changes over time.
So, for example, have your white blood cell or platelet levels been dropping? That would be further confirmation that your myeloma is impacting your bone marrow's ability to produce blood cells.
Similarly, if your calcium levels have been increasing, that could suggest that myeloma has been eating away at your bones, releasing calcium into the blood.
Do you also get your serum creatinine level checked regularly? If so, what has happened with it the past few months?
Too bad you don't have any recent free light chain results. They would really help in figuring out what might be going on.
Let's set aside for now any results that are related to your anemia. Those results certainly suggest that something could be going on with your myeloma. However, given your history of anemia, it's not clear how reliable a signal that set of lab results is.
So if you look at your white blood cell, platelet, and calcium levels, have they been changing much over the past 3-6 months? Although test results from a single point in time can be helpful, it's more helpful when you can look at changes over time.
So, for example, have your white blood cell or platelet levels been dropping? That would be further confirmation that your myeloma is impacting your bone marrow's ability to produce blood cells.
Similarly, if your calcium levels have been increasing, that could suggest that myeloma has been eating away at your bones, releasing calcium into the blood.
Do you also get your serum creatinine level checked regularly? If so, what has happened with it the past few months?
Re: So, am I relapsing?
I'll get my results sheets out. I haven't got all of them, but enough to give a sense of what has been going on, I think.
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: So, am I relapsing?
Result 2017 2018
Jul Aug Sep Oct Nov Dec Jan Feb Mar Apr Ref Range
Hgb 108 105 106 95 99 90 87 82 140 - 180
WBC 4.3 9.4 9.12 8.82 9.0 7.68 7.34 7.5 4 - 11
PLT 385 463 617 453 465 371 374 346 140 - 450
Albumin 33 41 41 35 - 50
Tot Prot 58 67 59 60 - 80
Globulin 25 26 18 22 - 32
As can be seen, some of my records are missing from my own collection.
Throughout the period shown, July 2017 - April 2018, my renal profile has been stable and within range, which accounts for creatinine, sodium, urea and potassium being ok.
Haven't got records of light chain ratios, it was about 34 at diagnosis with the IgG kappa at about 669 and the lambda one slightly low I think. It's never been mentioned, so I'm assuming it's been ok while in remission.
The highest my hemoglobin has been was in Feb 2017, when it was 127, up from 75 at diagnosis in Oct 2016.
The spikes in my platelet numbers might be due to having one of my stomas re-done.
Taff
Jul Aug Sep Oct Nov Dec Jan Feb Mar Apr Ref Range
Hgb 108 105 106 95 99 90 87 82 140 - 180
WBC 4.3 9.4 9.12 8.82 9.0 7.68 7.34 7.5 4 - 11
PLT 385 463 617 453 465 371 374 346 140 - 450
Albumin 33 41 41 35 - 50
Tot Prot 58 67 59 60 - 80
Globulin 25 26 18 22 - 32
As can be seen, some of my records are missing from my own collection.
Throughout the period shown, July 2017 - April 2018, my renal profile has been stable and within range, which accounts for creatinine, sodium, urea and potassium being ok.
Haven't got records of light chain ratios, it was about 34 at diagnosis with the IgG kappa at about 669 and the lambda one slightly low I think. It's never been mentioned, so I'm assuming it's been ok while in remission.
The highest my hemoglobin has been was in Feb 2017, when it was 127, up from 75 at diagnosis in Oct 2016.
The spikes in my platelet numbers might be due to having one of my stomas re-done.
Taff
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
Re: So, am I relapsing?
Great, Taff. Those results certainly help give a better picture of what's been going on.
It looks like both your WBC and platelet levels were bouncing around a bit before the end of 2017. What sticks out to me, however, when I crunched your numbers a bit is that, after January of this year, your hemoglobin, WBC count, and platelet count all start to dip. Your hemoglobin and WBC count are both down nearly 20 percent, and your platelet count is down more than 25 percent.
The fact that all three results have declined at the same time, and all three are related to bone marrow function, gives me pause.
You said your M-spike has been nonexistent so far since your induction therapy. How often is your M-spike (paraprotein level) tested?
If you have them handy, you might want to get out your free light chain results and tabulate them. Or even graph them. Even though you only get the results every three months, you still might see some trends in the results once you get them all in one place.
Multibilly, who has smoldering myeloma, tracks and graphs his key lab results, as you can see in this update in the thread where he shares them:
https://myelomabeacon.org/forum/post52895.html#p52895
When you see the history of the results all at once, it really helps put individual test results into perspective.
I haven't said anything about your protein levels because I'm assuming, with no M-spike, that they're not saying much. The question is whether you're experiencing a nonsecretory relapse, or one that shows up only slightly in your free light chain levels (which is still to be determined).
I hope all this is helping a bit!
It looks like both your WBC and platelet levels were bouncing around a bit before the end of 2017. What sticks out to me, however, when I crunched your numbers a bit is that, after January of this year, your hemoglobin, WBC count, and platelet count all start to dip. Your hemoglobin and WBC count are both down nearly 20 percent, and your platelet count is down more than 25 percent.
The fact that all three results have declined at the same time, and all three are related to bone marrow function, gives me pause.
You said your M-spike has been nonexistent so far since your induction therapy. How often is your M-spike (paraprotein level) tested?
If you have them handy, you might want to get out your free light chain results and tabulate them. Or even graph them. Even though you only get the results every three months, you still might see some trends in the results once you get them all in one place.
Multibilly, who has smoldering myeloma, tracks and graphs his key lab results, as you can see in this update in the thread where he shares them:
https://myelomabeacon.org/forum/post52895.html#p52895
When you see the history of the results all at once, it really helps put individual test results into perspective.
I haven't said anything about your protein levels because I'm assuming, with no M-spike, that they're not saying much. The question is whether you're experiencing a nonsecretory relapse, or one that shows up only slightly in your free light chain levels (which is still to be determined).
I hope all this is helping a bit!
Re: So, am I relapsing?
Good Morning Terry,
It is indeed helpful and very interesting to get another perspective. I can see the benefit of tracking trends in levels and a couple of weeks ago I made myself a chart of my hemoglobin levels. I'd intended to chart the others as well, but it's difficult to focus and concentrate enough to do so.
What happens every month when I have my bloods done, is that some can be tested immediately on a machine in the hospital and then some other tests are done in the lab. I just get a printout of the immediate tests, which would be the full blood count, showing such that I've been able to post.
Because I'd requested some records for something else, I've got some from time of diagnosis, and it's only these that show me any of the other stuff you mention.
When I see my consultant for my 3-monthly check, it's usually been a case of, 'It's all good, no sign of any paraprotein / M-spike,' and answers to any questions I might have.
Another consultant had been asked to investigate my anaemia and had ordered a GI investigation, which involved cameras down the throat and through my colostomy. Due to a stricture, though, the camera couldn't go more than a couple of centimetres into my stoma, so that test was cancelled.
And that's as far as the investigation has gone thus far. Because there's no sign of bleeding or bruising, I thought I might be starting to relapse. I think the GI investigation was to rule out 'other' cause for anaemia, thus pointing to relapse.
I don't know if it's significant that I got sepsis and had my first bowel operation around late June, or if subsequent minor operations to redo the stoma will have had any effect.
My diet has been atrocious for much of the time since diagnosis, and I could well be lacking in something, such that I'm not absorbing iron.
It'll no doubt become clear in the next few weeks when I have bloods take again. As can be seen, there's other possible causes, but for reasons I can't explain, I've got a feeling that it's the start of a relapse, but I'm unable to interpret the blood results that I have.
But it's great to get another perspective, so thanks a lot for your input. It's much appreciated.
Taff
It is indeed helpful and very interesting to get another perspective. I can see the benefit of tracking trends in levels and a couple of weeks ago I made myself a chart of my hemoglobin levels. I'd intended to chart the others as well, but it's difficult to focus and concentrate enough to do so.
What happens every month when I have my bloods done, is that some can be tested immediately on a machine in the hospital and then some other tests are done in the lab. I just get a printout of the immediate tests, which would be the full blood count, showing such that I've been able to post.
Because I'd requested some records for something else, I've got some from time of diagnosis, and it's only these that show me any of the other stuff you mention.
When I see my consultant for my 3-monthly check, it's usually been a case of, 'It's all good, no sign of any paraprotein / M-spike,' and answers to any questions I might have.
Another consultant had been asked to investigate my anaemia and had ordered a GI investigation, which involved cameras down the throat and through my colostomy. Due to a stricture, though, the camera couldn't go more than a couple of centimetres into my stoma, so that test was cancelled.
And that's as far as the investigation has gone thus far. Because there's no sign of bleeding or bruising, I thought I might be starting to relapse. I think the GI investigation was to rule out 'other' cause for anaemia, thus pointing to relapse.
I don't know if it's significant that I got sepsis and had my first bowel operation around late June, or if subsequent minor operations to redo the stoma will have had any effect.
My diet has been atrocious for much of the time since diagnosis, and I could well be lacking in something, such that I'm not absorbing iron.
It'll no doubt become clear in the next few weeks when I have bloods take again. As can be seen, there's other possible causes, but for reasons I can't explain, I've got a feeling that it's the start of a relapse, but I'm unable to interpret the blood results that I have.
But it's great to get another perspective, so thanks a lot for your input. It's much appreciated.
Taff
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Taff - Name: Taff
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 61
8 posts
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