4 Years In Remission from Stage IV Non-Hodgkins DLBCL and Scared for the First Time.
In September of 2011, I wrote the following: “…hearing that my “backache” was an aggressive and very advanced cancer has thrown me for an utter and completely surreal loop but I feel (down deep / in my soul / existentially) that this isn’t gonna’ get me. Advanced/aggressive DLBCL can be treatable - possibly, curable. Great. I’ll take that kind, please and thank you.”
It’s been 4 years since I wrote those lines and 4 years since my last of 6 sessions of R-EPOCH; about 500 in-patient hours of that oh-so-lovely cocktail. Until 1 month ago I remained totally confident and experienced zero doubts that I had well and truly licked this sucker. Licked it by relying upon an amazingly supportive husband (who spent 30 nights in a hospital “chair/bed”), my terrific Oncologist at COH, the help of a strong constitution, previously great health, and a kick-**** attitude. I’m a female nearing 67.
In the past month, however, I find myself frightfully concerned that I may be experiencing relapse. This is NOT LIKE ME!
In 2 days I have my year 4 checkup (have gone every 6 months) and all has been stellar. I do understand that Tuesday’s blood work and my doc’s exam will tell me what’s what but I can’t seem to get this off my mind. But meantime, I just wanted to get my nerves in check by writing and posting.
I should note that the past 6 months have been very stressful, mainly due to illness of spouse who is now completely fine. Additionally, in November and December 2015 I incurred a couple of minor but painful sports related injuries (right upper leg and then neck). Those have, apparently, healed. I guess I’m hoping that they may not actually BE completely healed and could be affecting /causing the symptoms that I’m only very recently noticing:
-
Previous (very slight) discomfort in and around the Iliac nodes was discussed with my Doc at every exam; palpating yielded nothing and blood work was fine so no worries. In just the last 3 weeks, though, that discomfort has become pain and is nearly-always accompanied by back pain in the lower-back/buttock area (sciatic nerve area?). Let’s call it a combined 3.5 on a 10 scale with occasional peaks to a 5. Heat and low-dose pain meds help. This combination pain only occurs at the end of the day usually after lying down or reclining.
-
Brand new pain on the right side (below ribcage)…like a bad stitch in the side when running. It waxes and wains but at its worse is a 4.5 on the pain scale. Have had this only a total of maybe 3 hours in the last 3 days.
-
Itching – only occasional but always around my neck area.
-
Headache – I rarely have any headaches. But I did have them during 3 recent consecutive weeks primarily focused behind and around my right eye. Perhaps brought on by neck injury (above)? They are largely gone now.
-
Dizziness – 4 times in past 2 months I’ve felt light-headed and once heard a whooshing sound (like the sound of my own blood pumping.) These disappeared immediately upon sitting.
-
Swollen neck lymph nodes – If there are any they are very mercurial; sometimes I think I feel one in my neck but other times I feel nothing. Imagination due to negative thoughts?
Well, it does feel better getting this all down in writing. If for no other reason than I need to be prepared to be very detailed with my Doctor.
Any thoughts out there?
Thanks for listening –
Paella
Comments
-
Some of those aches and pains could be just aches and pains. But having a boss who is a cancer survivor and recently having gotten to that stage myself, I can understand your concerns. Some of it could be from not drinking enough water but with that list of issues you are right to see your dr. Don't give up until you feel that you have all of the answers you need. I hope you still get the "all clear" sign.
0 -
Thanks, Lindary!lindary said:Some of those aches and pains could be just aches and pains. But having a boss who is a cancer survivor and recently having gotten to that stage myself, I can understand your concerns. Some of it could be from not drinking enough water but with that list of issues you are right to see your dr. Don't give up until you feel that you have all of the answers you need. I hope you still get the "all clear" sign.
How are YOU doing?
I'll post after my appt.
Paella
0 -
Things that make you go hum......
First I would to congratulate you on your success and positive perseverance in reclaiming your health. I can relate to where your coming from in the manner of which you faced your cancer. I too am positive but it can be exhausting at times. I'm only a year since my last treatment and recieved the best possible result.
I have stage IV Follicular Non Hodgkins Lymphoma and the symptoms may be different? When I read your post I first wondered what was your injury, could some of your symptoms be non related to lymphoma? I was very symptomatic, extreme fatigue, swollen lymph nodes, freezing cold, back and legs itched. I had no pain except for where one of the nodes continued to grow and encroached upon the back of my jaw. My blood work was fine.
I agree with Linda, too many symptoms and would seek answers to all your concerns. I feel once we're admitted into this club all cards are off the table and everything should be taken seriously. Ten years before I was diagnosis I had a emergency mamogram for a small hard circular like spot I found. Over the years it grew, one leading nationally and internationally recognized arrogant doctor who was reading my scans, laughed at my concern and dismissed it as it was NOTHING. Never once considered lymphoma.... I could have been stage I instead of stage IV.
I hope and pray these are non cancer related concerns and addressed successfully and swiftly.
0 -
Follow-Up
Paella,
My 'gut read' of your concern, which I would say the majority of writers here admit to themselves, is follow-up anxiety.
I have it myself, and it more-or-less fades into the background until 'the visit' is near.
Three things you described I have experienced exactly: 1. I recently started waking up with itching. I called my NP, and after a little review, we realized it was from a narcotic I had been taking following hernia surgery. I stopped the med, and the itching went away. 2. A swelling sensation; mine was in my throat. The onc did a thorough touch exam, and said that sinus glands were in the area, but that no nodes were enlarged. I did not have a cold that I could detect, but the sensation reoccures periodically, and now I just ignore it. Similiar under my armpits: At times it is hard to lower the arms, the area feels so swollen. But the onc said that this "puffy sensation" is common in lymphoma patients. All touch exams were negative. I now ignore that as well.
3. I have had a pain in my lower right gut for years. My gall bladder was removed from a little above this pain area four years ago. Doctors have felt it and said that they felt nothing, and added that "there isn't much in that area to hurt anyway." I have had clean routine colonoscopies. Routine CTs in follow-up have shown nothng there. Your mystery pain is more likely random than lymphoma. Headaches and dizziness too are not ordinarily a strong lymphoma indication. You might want your sugar levels and blood pressure checked, however. If your 'swollen nodes' are not even detectable much of the time, what does that suggest ? Cancer inside a node does not come and go, it just comes and stays.
I am five years clean of HL; approximately your time frame. Follow-up anxiety never completely leave most survivors is my assessment. But it does seem to mitigate with most over time. I have a prostate cancer PSA test coming up this month (following prostate removal for Stage IIA prostate cancer), and lung scans from a pulmonologist (following detection of a lung nodule two years ago, which ais almost certainly benign), and a lymphoma annual follow-up with my NP scheduled for the summer (pertaining to my Stage IIIA HL).
We can all relate to your worries.
I love your name, which sounds Roman to me.
I hope we hear from you in a day or two with "all clear" news. I suspect that we will,
max
0 -
Max - Your words were almost as good as a 1 mg Ativan!Follow-Up
Paella,
My 'gut read' of your concern, which I would say the majority of writers here admit to themselves, is follow-up anxiety.
I have it myself, and it more-or-less fades into the background until 'the visit' is near.
Three things you described I have experienced exactly: 1. I recently started waking up with itching. I called my NP, and after a little review, we realized it was from a narcotic I had been taking following hernia surgery. I stopped the med, and the itching went away. 2. A swelling sensation; mine was in my throat. The onc did a thorough touch exam, and said that sinus glands were in the area, but that no nodes were enlarged. I did not have a cold that I could detect, but the sensation reoccures periodically, and now I just ignore it. Similiar under my armpits: At times it is hard to lower the arms, the area feels so swollen. But the onc said that this "puffy sensation" is common in lymphoma patients. All touch exams were negative. I now ignore that as well.
3. I have had a pain in my lower right gut for years. My gall bladder was removed from a little above this pain area four years ago. Doctors have felt it and said that they felt nothing, and added that "there isn't much in that area to hurt anyway." I have had clean routine colonoscopies. Routine CTs in follow-up have shown nothng there. Your mystery pain is more likely random than lymphoma. Headaches and dizziness too are not ordinarily a strong lymphoma indication. You might want your sugar levels and blood pressure checked, however. If your 'swollen nodes' are not even detectable much of the time, what does that suggest ? Cancer inside a node does not come and go, it just comes and stays.
I am five years clean of HL; approximately your time frame. Follow-up anxiety never completely leave most survivors is my assessment. But it does seem to mitigate with most over time. I have a prostate cancer PSA test coming up this month (following prostate removal for Stage IIA prostate cancer), and lung scans from a pulmonologist (following detection of a lung nodule two years ago, which ais almost certainly benign), and a lymphoma annual follow-up with my NP scheduled for the summer (pertaining to my Stage IIIA HL).
We can all relate to your worries.
I love your name, which sounds Roman to me.
I hope we hear from you in a day or two with "all clear" news. I suspect that we will,
max
Seriously, it was just what I needed to hear since tomorrow is the big year 4 check up day. Good common sense, logic and the perfect amount of encouragement - thanks so much!
I read your profile and recommend that everyone read your paragraph about BEING ONE'S OWN ADVOCATE.
My husband also had prostate cancer (in 2010 when he was 65) and prostatectomy via DaVinci. I found that prior to his diagnosis /surgery I became that buried "research person". I knew more about prostate cancer than most men (I'm a 66 year-old female but haven't filled out a csn profile). Ultimately it was a few fellas on a prostate cancer forum (name escapes me now) that offered some of the most valuable info during what felt like thousands of hours of internet.
Regards - Paella
0 -
Aches & pains & suchpaella said:Max - Your words were almost as good as a 1 mg Ativan!
Seriously, it was just what I needed to hear since tomorrow is the big year 4 check up day. Good common sense, logic and the perfect amount of encouragement - thanks so much!
I read your profile and recommend that everyone read your paragraph about BEING ONE'S OWN ADVOCATE.
My husband also had prostate cancer (in 2010 when he was 65) and prostatectomy via DaVinci. I found that prior to his diagnosis /surgery I became that buried "research person". I knew more about prostate cancer than most men (I'm a 66 year-old female but haven't filled out a csn profile). Ultimately it was a few fellas on a prostate cancer forum (name escapes me now) that offered some of the most valuable info during what felt like thousands of hours of internet.
Regards - Paella
Of course being 65 and not always very active I tend to have a certain amount of aches & pains anyway. Lower back, I've had that since the third kid. Knees had been a problem for the last 4 or 5 years. Feet hurting when I stand too long. That is newer but the cause is that I spent most of last year sitting or resting. Now that I have been back in the office every day for the last 3 months, which give me many chances to just stand for 10 mins or more, it seems my feet are able to handle longer periods of standing.
Since all of this started I have been on my husband about any aches & pains he is having. Result is his dr ran some test and they found that the stent they put in by the one kidney wasn't working and a new one had to be put in.
Right now it is so cold in our area I am lucky to feel anything but frozen.
0 -
More thanks than a Golden Globe winner....paella said:Max - Your words were almost as good as a 1 mg Ativan!
Seriously, it was just what I needed to hear since tomorrow is the big year 4 check up day. Good common sense, logic and the perfect amount of encouragement - thanks so much!
I read your profile and recommend that everyone read your paragraph about BEING ONE'S OWN ADVOCATE.
My husband also had prostate cancer (in 2010 when he was 65) and prostatectomy via DaVinci. I found that prior to his diagnosis /surgery I became that buried "research person". I knew more about prostate cancer than most men (I'm a 66 year-old female but haven't filled out a csn profile). Ultimately it was a few fellas on a prostate cancer forum (name escapes me now) that offered some of the most valuable info during what felt like thousands of hours of internet.
Regards - Paella
Paella,
I have been called many things, but being as good as an mg of Ativan is very likely my finest moment ever.
I am glad your husband is well.... Yes, there are many encyclopedic members there at prostate. "Vasco" is preeminent; his range of knowledge is astonishing, actually. He is from Portugal I believe, but has received treatments all around the world....we all love him dearly.
You are so detailed and have such precision in your writing that I hope you decide to do a Profile. I found that my "crash course" in prostate cancer actually assisted me in understanding the uniqueness of lymphoma. You are "cross fertilized" in information as well. Writing at CSN is as beneficial to the writer as to the reader. I get more here that I have ever given.
Awaiting your good wellness report,
max
0 -
News from Paella on the 4-year checkup
Hello all (esp. Max, lindery and 007)
Sadly, my worries about today’s check-up were to some degree grounded in reality. Won’t know to what degree until next week’s just-scheduled Pet Scan. The Doc agreed that many of my newly-acquired (minor) aches and pains probably have nothing to do with NHL but some of those plus a few palpable nodes plus mostly the Blood Work made her decide that this needs to be delved into. It may end up being nothing but honestly I’m so much less worried than I have been. Now why is that? Well, I’m back in the hands of the worst enemies that a blood disease can have and it better be shaking in its friggin’ boots!
My culprit blood item was the LDH. Did you know that sometime in the last six months the acceptable range of LDH was changed from 313-618 to 140–271. Can anyone explain why and what it means? Today mine was 302…not horrifying under the new scale but certainly worthy of investigation. All these Post-Chemo years (but under the old LDH regime) it was never over 508 and usually in the mid-400's.)
So, sure, a relapse will be a bump in the road but I have to say that, overall I feel too generally healthy for it to be more than a teeny bump. I plan to stay OFF the internet (except for this site and to try to understand the why, the how and the meaning of this LDH revision). I’ll think about autologous bone marrow transplants, clinical trials, etc. only when I actually have to think about them. It’s clear that the state of the art in Treatment has come a long way since 2011 with more effective less toxic alternatives and better stuff to come, no doubt.
I’m off to have at least 2 glasses of wine and some disgustingly well-marbled beef with my sweet patootie.
Until Later – Paella
0 -
Dark sidepaella said:News from Paella on the 4-year checkup
Hello all (esp. Max, lindery and 007)
Sadly, my worries about today’s check-up were to some degree grounded in reality. Won’t know to what degree until next week’s just-scheduled Pet Scan. The Doc agreed that many of my newly-acquired (minor) aches and pains probably have nothing to do with NHL but some of those plus a few palpable nodes plus mostly the Blood Work made her decide that this needs to be delved into. It may end up being nothing but honestly I’m so much less worried than I have been. Now why is that? Well, I’m back in the hands of the worst enemies that a blood disease can have and it better be shaking in its friggin’ boots!
My culprit blood item was the LDH. Did you know that sometime in the last six months the acceptable range of LDH was changed from 313-618 to 140–271. Can anyone explain why and what it means? Today mine was 302…not horrifying under the new scale but certainly worthy of investigation. All these Post-Chemo years (but under the old LDH regime) it was never over 508 and usually in the mid-400's.)
So, sure, a relapse will be a bump in the road but I have to say that, overall I feel too generally healthy for it to be more than a teeny bump. I plan to stay OFF the internet (except for this site and to try to understand the why, the how and the meaning of this LDH revision). I’ll think about autologous bone marrow transplants, clinical trials, etc. only when I actually have to think about them. It’s clear that the state of the art in Treatment has come a long way since 2011 with more effective less toxic alternatives and better stuff to come, no doubt.
I’m off to have at least 2 glasses of wine and some disgustingly well-marbled beef with my sweet patootie.
Until Later – Paella
Enjoy the food and wine, you haven't crossed over to the dark side today so Don't go there....
0 -
Assessmentpaella said:News from Paella on the 4-year checkup
Hello all (esp. Max, lindery and 007)
Sadly, my worries about today’s check-up were to some degree grounded in reality. Won’t know to what degree until next week’s just-scheduled Pet Scan. The Doc agreed that many of my newly-acquired (minor) aches and pains probably have nothing to do with NHL but some of those plus a few palpable nodes plus mostly the Blood Work made her decide that this needs to be delved into. It may end up being nothing but honestly I’m so much less worried than I have been. Now why is that? Well, I’m back in the hands of the worst enemies that a blood disease can have and it better be shaking in its friggin’ boots!
My culprit blood item was the LDH. Did you know that sometime in the last six months the acceptable range of LDH was changed from 313-618 to 140–271. Can anyone explain why and what it means? Today mine was 302…not horrifying under the new scale but certainly worthy of investigation. All these Post-Chemo years (but under the old LDH regime) it was never over 508 and usually in the mid-400's.)
So, sure, a relapse will be a bump in the road but I have to say that, overall I feel too generally healthy for it to be more than a teeny bump. I plan to stay OFF the internet (except for this site and to try to understand the why, the how and the meaning of this LDH revision). I’ll think about autologous bone marrow transplants, clinical trials, etc. only when I actually have to think about them. It’s clear that the state of the art in Treatment has come a long way since 2011 with more effective less toxic alternatives and better stuff to come, no doubt.
I’m off to have at least 2 glasses of wine and some disgustingly well-marbled beef with my sweet patootie.
Until Later – Paella
Paella,
While the oncologist scheduling you for a PET is objectively disappointing and would bother anyone, it does not seem like a radical game-changer to me, writing from the luxury of a distance. It does not take a huge amount of data to get our docs to test us patients who in the past have had late stage lymphoma. You presented enough potentially worrisome facts to render it very likely that the test would be ordered. Thoroughness is a good thing !
LDH. "Normal Range" values often vary by lab. My LDH results from 2009 show a normal range of 100-250 IU/L . My most recent LDH test, from August, 2014 shows a normal range of 90-245 IU/L. My lab's range, both in 2009 and today are consistent with your labs current standards. I cannot square my lab's numbers with your old lab's numbers (313-618) however, unless a differing unit of measure was employed. Ask you oncologist to explain this. Consistent with this, I cannot understand a routine result of LDH of ~450 which you report. Again, I would have the doctor fit the lab's previous measuring criteria into your new results. I suspect she can readily explain it.
LDH is a measure primarily of cell-death residue (by product of cell death). It will shoot up following trauma or serious infection. It is also the test used for years in ER's to determine if a heart attack has occured, and whether or not a known heart attack caused significant muscle damage.
Given that your baseline while cancer-free was 450, I would not let this number scare me; I would simply want to know how to convert the old numbers into the lab's new standard which shifted radically it seems. Take your old and new results to your next office visit and demand an explanation, IN ENGLISH.
Be your own advocate ! I am not a 'whistle-in-the-dark' kind of guy. I know relapse occures. The PET is a good thing. But I still hope it shows not potential 'hot spots.'
As Tom Petty sang, "the waiting is the hardest part."
max
This article is complex, but may be of value: https://en.wikipedia.org/wiki/Lactate_dehydrogenase
0 -
LDHAssessment
Paella,
While the oncologist scheduling you for a PET is objectively disappointing and would bother anyone, it does not seem like a radical game-changer to me, writing from the luxury of a distance. It does not take a huge amount of data to get our docs to test us patients who in the past have had late stage lymphoma. You presented enough potentially worrisome facts to render it very likely that the test would be ordered. Thoroughness is a good thing !
LDH. "Normal Range" values often vary by lab. My LDH results from 2009 show a normal range of 100-250 IU/L . My most recent LDH test, from August, 2014 shows a normal range of 90-245 IU/L. My lab's range, both in 2009 and today are consistent with your labs current standards. I cannot square my lab's numbers with your old lab's numbers (313-618) however, unless a differing unit of measure was employed. Ask you oncologist to explain this. Consistent with this, I cannot understand a routine result of LDH of ~450 which you report. Again, I would have the doctor fit the lab's previous measuring criteria into your new results. I suspect she can readily explain it.
LDH is a measure primarily of cell-death residue (by product of cell death). It will shoot up following trauma or serious infection. It is also the test used for years in ER's to determine if a heart attack has occured, and whether or not a known heart attack caused significant muscle damage.
Given that your baseline while cancer-free was 450, I would not let this number scare me; I would simply want to know how to convert the old numbers into the lab's new standard which shifted radically it seems. Take your old and new results to your next office visit and demand an explanation, IN ENGLISH.
Be your own advocate ! I am not a 'whistle-in-the-dark' kind of guy. I know relapse occures. The PET is a good thing. But I still hope it shows not potential 'hot spots.'
As Tom Petty sang, "the waiting is the hardest part."
max
This article is complex, but may be of value: https://en.wikipedia.org/wiki/Lactate_dehydrogenase
Paella, I was wondering if by chance your test was sent to a different lab? Because, as Max says, the normal reference range for LDH can vary widely from lab to lab. Also, my lab, which is right within my cancer clinic, delivers my CBC and metabolic profile tests within 30 minutes. But we have to wait 24 hours for the LDH. It leaves me wondering why you got yours the same day and I have to wait?
From the time I was diagnosed in 2012 until my latest appointment last month, my lab has consistently referenced 105 - 333 as the normal range for LDH.
I'm glad your doctor has ordered a PET scan. Like you, I would feel more comfortable, when in doubt, to go ahead and find out rather than continue to worry. I do hope everything is A-OK. I would also ask about those reference changes to LDH and perhaps ask to have the test repeated.
Hugs,
Rocquie
0 -
Confusingpaella said:News from Paella on the 4-year checkup
Hello all (esp. Max, lindery and 007)
Sadly, my worries about today’s check-up were to some degree grounded in reality. Won’t know to what degree until next week’s just-scheduled Pet Scan. The Doc agreed that many of my newly-acquired (minor) aches and pains probably have nothing to do with NHL but some of those plus a few palpable nodes plus mostly the Blood Work made her decide that this needs to be delved into. It may end up being nothing but honestly I’m so much less worried than I have been. Now why is that? Well, I’m back in the hands of the worst enemies that a blood disease can have and it better be shaking in its friggin’ boots!
My culprit blood item was the LDH. Did you know that sometime in the last six months the acceptable range of LDH was changed from 313-618 to 140–271. Can anyone explain why and what it means? Today mine was 302…not horrifying under the new scale but certainly worthy of investigation. All these Post-Chemo years (but under the old LDH regime) it was never over 508 and usually in the mid-400's.)
So, sure, a relapse will be a bump in the road but I have to say that, overall I feel too generally healthy for it to be more than a teeny bump. I plan to stay OFF the internet (except for this site and to try to understand the why, the how and the meaning of this LDH revision). I’ll think about autologous bone marrow transplants, clinical trials, etc. only when I actually have to think about them. It’s clear that the state of the art in Treatment has come a long way since 2011 with more effective less toxic alternatives and better stuff to come, no doubt.
I’m off to have at least 2 glasses of wine and some disgustingly well-marbled beef with my sweet patootie.
Until Later – Paella
Paella, I was told to always get my blood work AND my PET from the same labs. Apparently most bloodwork is automated and results vary from lab to lab. LDH in particular is tricky and should always be done manually. Don't be too concerned. I saw an article where blood samples taken at the same time with the results being significantly different. I know this is not encouraging but be assured trends are more important than absolute values. So in a nutshell if you use multiple labs you are compaing apples to oranges and maybe tangerines.
stay calm, return fire
0 -
‘Preciate all your thoughts!unknown said:Confusing
Paella, I was told to always get my blood work AND my PET from the same labs. Apparently most bloodwork is automated and results vary from lab to lab. LDH in particular is tricky and should always be done manually. Don't be too concerned. I saw an article where blood samples taken at the same time with the results being significantly different. I know this is not encouraging but be assured trends are more important than absolute values. So in a nutshell if you use multiple labs you are compaing apples to oranges and maybe tangerines.
stay calm, return fire
To everyone – thanks you for the input.
Hope everyone is well.
Here’s a question about the csn forum. If I reply to “last reply” (in this case GKH) is that meant to be a reply to all previous replies? Probably a stupid question but I’m extremely not techy. I guess my question really is: if I want to reply IN GENERAL, to the general subject being discussed, am I doing it right by replying to the “last reply” in a thread?
Anyway, am feeling great, staying busy and, as Mother Maybelle said, “keeping on the sunny side”. Petscan still scheduled for Tuesday AM…although waiting to hear if Medicare will cover it (yikes).
FYI - My lab is the City of Hope lab. Their LDH results are a bit later than the rest of the blood work, but always within 2 to 3 hours. I think only once or twice did they arrive after my checkup had been completed so that the results had to be phoned in to me.
I’ve suggested a re-take of the LDH to see what the team there thinks.
Best - Paella
Oh – and this is a great explanation of the lymphoma blood test purposes and meanings. http://www.lymphomation.org/tests-labs.htm
0 -
paella said:
‘Preciate all your thoughts!
To everyone – thanks you for the input.
Hope everyone is well.
Here’s a question about the csn forum. If I reply to “last reply” (in this case GKH) is that meant to be a reply to all previous replies? Probably a stupid question but I’m extremely not techy. I guess my question really is: if I want to reply IN GENERAL, to the general subject being discussed, am I doing it right by replying to the “last reply” in a thread?
Anyway, am feeling great, staying busy and, as Mother Maybelle said, “keeping on the sunny side”. Petscan still scheduled for Tuesday AM…although waiting to hear if Medicare will cover it (yikes).
FYI - My lab is the City of Hope lab. Their LDH results are a bit later than the rest of the blood work, but always within 2 to 3 hours. I think only once or twice did they arrive after my checkup had been completed so that the results had to be phoned in to me.
I’ve suggested a re-take of the LDH to see what the team there thinks.
Best - Paella
Oh – and this is a great explanation of the lymphoma blood test purposes and meanings. http://www.lymphomation.org/tests-labs.htm
Paella,
I will certainly be hoping and praying on Tuesday morning that the PET shows "no orange or red."
There is no "right" or "wrong" way to reply, that I am aware of. Ordinarily, if you reply to one given writer, your response will appear under that box, and be slightly indented.
I ordinarily write out the name of the person I am addressing, to try to avoid confusion (like someone would do in a hand-written letter). Similiarly, if I am replying to several people, I will mention that it is to "All Responders," or someting similiar. But again, internet writing, like texting, is a pretty sloppy, make-it-up-as-you-go-along medium. I use a theology Discussion Board, and their system tags the top of every response to whomever you are replying to , but CNS does not have that system in place here.
I recall that my LDH also took longer to develop than the rest of the panel "back in the day," but I do not know if that is still the case. LDH and Sedementation Rate are specialty tests, not included in most CBC lab sets. Labs sell "panels" as "sets." These (like the CBC) are fairly standardized, but there are small variations between labs even between what is included. One lab will have a test in their CBC "package" that another lab might not. My cancer center (which has its own lab at most of their locations) included the LDH and Sedementation under what they called a "Metabolic Panel."
I recall an oddity of my LDH history. My LDH was NORMAL when I was diagnosed with advanced disease. The LDH ony shot up after chemo began. My LDH then precisely tracked with the shrinkage of the tumor sizes, as they shrank (it went down as the tumors reduced). After chemo ended, by LDH went back to normal. What I took from this (I never asked my doctor about it) is that LDH would have been of no diagnostic value of lymphoma in my case. The higher readings seems to be caused by cell death induced by the drugs; that it, they detected cell damage from the millions of cancer cells that the drugs were killing, which makes sense, given that the range went back to normal after treatment. I do not know if anyone else has observed this, and I do not know if it is common or uncommon/odd. I will ask in July when I see my NP. The link you provided says that an absolute value of a test result, even if it is abnormal, is less significant that a change, especially a steady trend. This might mean that you staying at around 450 for several years is not indicative of lymphoma. This is just a speculation on my untrained part.
I have a few years before Medicare takes over my insurance, so I do not know really what they are like, but I cannot imagine that they would not pay for the PET.
I will read your Testing link first chance I get.
I am still optimistic about Tuesday ! I have a one-year post-prostactomy PSA on the 29th myself.
I know that City of Hope is one of the best, I believe mostly in the LA area. Lots of writers here are from California, and it seems like most on the prostate board are from California, for some reason. My oncologist went to Stanford and UCLA. They don't get any better than that. I grew up on the coast in Charleston, SC, but have lived in the "Upstate" of SC for years now, at the base of the Smokey Mountains. I am still called a "flatlander" and "geechie." "Geechie" is a regional term applied to whites from the coastal regions of SC and Georgia; supposidely we speak a bit differently. Not to be confused with "Gullah," which was a language that developed among sea island slaves and slave descenants. A few Gyullah speakers are still to be found, and there are efforts to preserve it. But as I grew up in the 60s there were a lot of Gullah speakers along the beaches, and I fully understood it.
Senator Ernest F. Hollings was from Charleston and spoke geechie perfectly, if you can find him on youtube
http://www.urbandictionary.com/define.php?term=geechy
"Fritz," as he was called: https://www.youtube.com/watch?v=3lobkzXRt-o
As I said, we can all relate to your anxiety at the moment. I like that wine and beef therapy you mentioned the other day !
max
0 -
Update from Paella
Sorry to report that I am, indeed, having recurrence of lymphoma. Petscan results from 1/19/15 show renewed activity…both nodal and extra-nodal. There is presence of not-seen-before bone lesions (but nothing to indicate that they’re lytic or blastic). And the spleen is now involved.
My doc was at a conference when she called me yesterday, thus I only know the nutshell stuff she told me. She’ll be back in-touch by phone today or tomorrow.
Gameplan: She will schedule me ASAP for a biopsy (after determining with radiology the safest, easiest place from which to harvest a biopsy). They’ll do Bone Marrow and CSF testing same day. Then the histology analysis begins which could take a week or more….as we all know, this requires meticulous and expert work as so much goes into completing and classifying and subtyping, etc. etc.
Well, s---, d--- and peepee caca. Another bump in the road which I honestly thought I’d avoid. But I am definitely feeling physically / emotionally /mentally very positive, strong and determined. I believe that feeding the *Good Wolf is the only logical way to live…a bit like Pascal’s wager, I guess.
http://www.nanticokeindians.org/tale_of_two_wolves.cfm
Paella
0 -
I'm so sorry....paella said:Update from Paella
Sorry to report that I am, indeed, having recurrence of lymphoma. Petscan results from 1/19/15 show renewed activity…both nodal and extra-nodal. There is presence of not-seen-before bone lesions (but nothing to indicate that they’re lytic or blastic). And the spleen is now involved.
My doc was at a conference when she called me yesterday, thus I only know the nutshell stuff she told me. She’ll be back in-touch by phone today or tomorrow.
Gameplan: She will schedule me ASAP for a biopsy (after determining with radiology the safest, easiest place from which to harvest a biopsy). They’ll do Bone Marrow and CSF testing same day. Then the histology analysis begins which could take a week or more….as we all know, this requires meticulous and expert work as so much goes into completing and classifying and subtyping, etc. etc.
Well, s---, d--- and peepee caca. Another bump in the road which I honestly thought I’d avoid. But I am definitely feeling physically / emotionally /mentally very positive, strong and determined. I believe that feeding the *Good Wolf is the only logical way to live…a bit like Pascal’s wager, I guess.
http://www.nanticokeindians.org/tale_of_two_wolves.cfm
Paella
and mad as hell! I too share and believe in your outlook on life but when you're feeling human just reach out and I will cheer YOU on.
ARGH.....
Be good to yourself. I'm speechless and sounding more like a truck driver than you.
More later,...
0 -
good luckpaella said:Update from Paella
Sorry to report that I am, indeed, having recurrence of lymphoma. Petscan results from 1/19/15 show renewed activity…both nodal and extra-nodal. There is presence of not-seen-before bone lesions (but nothing to indicate that they’re lytic or blastic). And the spleen is now involved.
My doc was at a conference when she called me yesterday, thus I only know the nutshell stuff she told me. She’ll be back in-touch by phone today or tomorrow.
Gameplan: She will schedule me ASAP for a biopsy (after determining with radiology the safest, easiest place from which to harvest a biopsy). They’ll do Bone Marrow and CSF testing same day. Then the histology analysis begins which could take a week or more….as we all know, this requires meticulous and expert work as so much goes into completing and classifying and subtyping, etc. etc.
Well, s---, d--- and peepee caca. Another bump in the road which I honestly thought I’d avoid. But I am definitely feeling physically / emotionally /mentally very positive, strong and determined. I believe that feeding the *Good Wolf is the only logical way to live…a bit like Pascal’s wager, I guess.
http://www.nanticokeindians.org/tale_of_two_wolves.cfm
Paella
I hope they find that this reoccurrance is treatable and goes back into remission. I also like your use of such technical terms (peepee caca). Makes me feel like I am talking with family. :-)
0 -
Sailor talkOO7 said:I'm so sorry....
and mad as hell! I too share and believe in your outlook on life but when you're feeling human just reach out and I will cheer YOU on.
ARGH.....
Be good to yourself. I'm speechless and sounding more like a truck driver than you.
More later,...
P,
Let us hope and pray that whatever strain you now have (it may have morphed into a different form of lymphoma) it is readily treatable and returnable to complete remission. Be aware also that SCT is not the only form of second-line treatment for many types of NHL. I am unaware of the particulars of your type regarding second-line conventions. LOTS of patients here are on single- or multi-drug maintenance therapies that seem to approximate full wellness for their particular disease status.
I would like to add that you should be proud and thankful that you went with your instincts. They were exactly correct. You are proof as to why smart people seem to live longer ! You will navigate the choices that open up before you very successfully and well.
max
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.9K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 398 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 794 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 63 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 540 Sarcoma
- 734 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards