I have no clue if this is related to the CLL or not- I had lymp nodes behind the ear really bothering me and acting 'strange' about 10 days or so ago. I emailed the oncologist and he said it was an infection & to go see my regular dr. ASAP. Did that and she gave me an antibiotic.
Finished that on tue., the lymph nodes are still bothering me a lot but I guess it must have been thurs. Night or fri. AM I started having issues with my neck and by fri. AM I was in immense pain, I want to cry- I discovered a huge nodule (bump?) on the back of the right side of my head. I immediately emailed my dr. who referred me to my oncologist. I emailed him but haven't heard.
Now I have discovered another good size one and a couple smaller ones. All are basically the back of the head.
The only one that bothers me is the one on the right, it makes me nauseous and I can't move my neck much that direction.
I haven't been in any accidents or anything.
Yesterday, I tried ice/heat pack off and on all day but the Ice made it hurt more. I was given a pain pill, that didn't help but when I took a REALLY hot shower my head was 'numbed' so that helped but as soon as I got out, it was throbbing again...I put a hot towel on for about 20 minutes this am, I'm not sure if it did anything or not.
IF my dr. Can't figure it out, I know the ER's here won't likely plus I just can't spend 6-7 hours waiting (that's how long my roommate had to wait AFTER the triage nurse determined she had a stroke!)....I hurt too much (plus thanks to the CLL, I can't stay awake that long!)
Anyone have any ideas/advice???
Thank you!
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rlyndecker
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You need to see your oncologist (and hope that they are well versed in CLL) as soon as you can if only for peace of mind. See if you can arrange an appointment either directly or via your GP.
My problem/concern is a) I won't be able to get in touch with him until Monday at the earliest I am guessing. That's assuming that he calls me back and I can answer the phone. Unless I can have him call my roommate... What do I do in the meantime and b) I have to go to work Monday...Friday was AWFUL.
If the pain is as bad as you are describing you need attention now. I totally agree with Chris, and would be your door to drive you if we were anywhere near each other! It's really important to not overlook the possibility of this being caused by an infection, and with CLL it's important to not allow infections to get a head start!
Now I am even more confused because I heard back from the Oncologist about an hour ago via email (he is a CLL Specialist), I forwarded him what my regular Dr. had said about seeing him and told him that I was in A LOT of pain, that the pain pill didn't help (Tylenol with Codeine) etc. He said he told his nurse to make me an apt. for Wed. for when he is in clinic...
I guess that's the next time he sees patients. My roommate did find something that relates it to a virus that is made worse by CLL and is an indication of the CLL progressing which I had a feeling last month it was. I'm not sure there is much anyone is going to be able to do.
As for answering the phone- just to make sure I was clear- the reason I wouldn't be able to is because I am a teacher not because I am physically unable.
Ugh I hate decisions, I definitely will go Wed to the Oncologist, but what do I do in the meantime? Suffer and go to work Monday? It'll be a long day because I have to deal with a major discipline issue that happened on Friday and then a staff meeting (Tue. at least is an in-service so if it gets too bad it's easier to leave).
Anyway, I'll be curious to see what he says- I'll let you know but in the meantime what do I do about Monday...feel guilty and call in sick or go and suffer?
I'm pleased that you have an appointment, though concerned that you have to wait until Wednesday. How experienced is your oncologist with CLL? The majority of oncologists specialise in solid tumours, not blood cancers and even general haematologists may not have sufficient experience in CLL to entrust your life to. There's excellent evidence that seeing a specialist CLL is the CLL patient's best option and that clearly makes sense when you consider how varied our individual experiences are with CLL. Only a CLL specialist will have the advantage of witnessing a wide range of patient histories supported by deep specialist knowledge to make the best judgement on appropriate care.
Sorry to say, but only you can make that decision about attending work. You'd know best whether you are likely to be infectious, where you stand with your sick leave allowance, how important your long term health and recovery from this current infection or whatever it is, is in comparison to fronting up Monday and Tuesday and perhaps having to go home anyway. Do you have a feel for how long it takes you to get over infections and how that time is likely to be extended by over exerting yourself? Most of us would agree that even before we had CLL, when we aren't feeling the best, we can get a false sense of how we'll cope at work - and regret turning up and finding out that we really can't perform satisfactorily.
Whatever you choose, I hope that your choice will subsequently be shown to be right.
I wasn't happy about having to wait until Wed. either but that's the day he's in the clinic...I'm not sure how "experienced" he is with CLL but that's his specialty now. He worked under Coutre from Stanford.
The strange thing about all this is this class has been one of the most stressful but overall despite my blood counts continuing to be awful and my lymph nodes bothering me/extremely fatigued- I have had NO MAJOR infections except over Thanksgiving and over Christmas break! This class is REALLY good about washing their hands etc.
It takes me forever to get over infections...
Normally, I would take off Monday for sure but I'm trying to save days in case I end up going out on sick leave during the school year (believe it or not each day matters a lot and since I live paycheck to paycheck as it is, one more day could add A LOT more money to my paycheck if I end up on sick leave)
There's never a "good" time in teaching but some weeks are worse than others and this is one of them!
Just a thought, do you have your blood tests done at the centre where you see your specialist just prior to seeing him? In your shoes, I'd make certain that I had current results available for your specialist's review so that he has a complete picture and can get a better idea of whether you have an infection driving the growth of your nodes or whether it is a change in your CLL.
I'm so sorry you're feeling so wretched rlyndecker and you certainly don't appear to be receiving the kind of urgent response you need to deal with the pain and ease the worry.
Reading your posts I'm struck by your feelings of stress, indecision and an overwhelming need not to want to appear a nuisance to anyone. I totally get the fact that you are dependent on this job and your commitments are important to you but your primary concern must be for yourself just now. Two weeks ago I went into work to undertake a job which guilt was propelling me to perform. I had a chest infection at the time and spent the next few days in bed because I shouldn't have gone. Sometimes a touch of selfishness is required when we are feeling so sick.
You need to be assertive now at the hospital. Surely this Consultant has a team and associate doctors who can see you as an emergency? Could you ring his secretary in the morning and say it really is an emergency not something to chat about in a planned consult?
You're being pulled in so many ways and commitment to your work is leading you to try and suppress an urgent health issue. I really hope you're feeling a lot better tomorrow and can fulfill them and hold on for the meeting. But feel no guilt if you're not and make a nuisance of yourself!
And if you continue to keep receiving a fairly cavalier attitude from your specialist, I'd seriously consider changing him. I'm sure as hell not having 'I didn't want to appear a nuisance' engraved on my headstone!
Good luck and try to reduce the stress and inner turmoil because I sense it's aggravating things for you.
I can't add a lot to what Newdawn has said but I whole heartedly agree with her. Your medical specialists and doctor appear to be beating around the bush as they say. Probably easier said than done but you need to be firm with them and demand better treatment. Is there someone that can give you some support whilst you do this. I hope things turn around quickly for you and you get some (hopefully good) answers soon. The stress this causes you can't be good either.
Have had cll for 3 years now and have it pretty well under control.. however , unlike you I am 76 years old and I have learned to insist that my md.s see me when I know there is something major going on in my body. I have gotten to be an onery old grouch. But it works. I insist that the see me regardless of their other commitments , as they cannot have more serious problems than yours 24 hours a day
I can visualize that while I am laying there in pain , they are taking the children to the park, having Ice Cream, then going home for a nap before dinner with friends and them maybe a movie.. In other words it is business as usual for him... as soon as he gets off of the phone or email he forgets you.
That is not why doctors go to school, they go so that they can learn to relieve the pain of someone like you.
THEY HAVE TO BE REMINDED that the reason they became MD's was to help people and relieve their pain.
Somewhere , after school they forget this and decide to live their own life .... You have to remind them that is not why they became an MD
I refuse to see a doctor that will not give me his cell # and email address and I inform him that if I call he should answer in 20 minutes as I will not bother him with trivial problems.
If the Md won't do the above, change to a new Md. that will.. a dedicated Md.
Hell, if your boss asked you to do something asap , it was very important and you told him ..OK I will get to it Wednesday, you would be looking for a new job.
I have had a similar experience three years in a row, prior to any therapy in W&W, always in the winter time. Roughly where you describe the pain are the location of the occipital nodes. The characteristics of my pain appeared to me to be caused by viral not bacterial activation. I self medicated with a full strength aspirin and L-lysine which I had used with effect to mitigate Herpes Simplex outbreaks in my nose for years prior to my CLL DX. I cannot give medical advice and given that many of us have issues that might contraindicate the use of L-lysine and or aspirin it is advised to discuss their use with your Doc.
The handing out of antibiotics in a case like this strikes me as poor medical practice. The L-lysine and aspirin greatly diminished the pain but it still took several days to completely resolve. I would suggest discussing the use of a more powerful antiviral med such as Valtrex (Valacyclovir) to see if that helps before ever taking an antibiotic. My reasoning is that an antibiotic will do nothing for a bacterial infection but will kill the microbiota in your gut that could actually be helping you fight infections. I know of very little downside to taking an antiviral like Valacyclovir or Famciclovir.
I know I come first, I don't know who to call though. I've never had a CLL emergency like this. Do I call UC Davis Oncology? Do I call the phone # on my Oncologist's card?
Three W's I didn't want to say that because people tend to get touchy when you self-diagnose but my roommate is GREAT at research and that's EXACTLY what she thinks is wrong with me...So much so that we were thinking that maybe since most of the time my primary is great about listening she might consider it and save me the wait. But then again, when I emailed her she was so concerned it was related to the CLL...
Also, yes, I do get blood drawn every time I go for my Oncology apt. at UC Davis and he gets a copy every month when I have it drawn in Stockton.
After reading ThreeWs do you think this is something a regular Dr. would be able to diagnose or is this something I need the oncologist to see?
Of course there are multiple explanations. I had a similar experience 10 years ago. The oncologist suggested it was a "rogue node" from the CLL. Excision revealed a Richter's transformation. My opinion only, but a sudden change in the appearance and size of nodes should warrant this consideration.
I think I am going to go ahead and call the Oncologist's office in the AM, go to work, give them permission to speak to my roommate (she does a MUCH better job at explaining things than I do anyway). She'll text me with anything they say. If need be, the principal will have to watch my class. I also going to email my primary Dr. and just see if she will look at the new bumps and maybe she can tell if it is a virus tomorrow.
That way maybe I can get some relief sooner but then the CLL expert sees me too.
I think at this point that's the best I'm going to get, unfortunately without going to the ER and I KNOW they won't be able to help!
I'm glad you are giving this priority. One thing you have learned from this experience is that your current medical care arrangements are not adequate. There are times with CLL due to infections quickly getting out of control or Richter's Transformation when hours count. Use this opportunity to negotiate better emergency care and if you aren't satisfied, find other providers. I don't mean to scare you, but lack of access to prompt medical care could cost you your life. Ten months ago I got a tiny cut on my finger. It was shallow and barely bled. Despite taking reasonable care it became infected and the bugs concerned were resistant to several antibiotics. When my finger began to swell and I went to my GP, he told me not to go to a public hospital emergency room - the wait would be too long, but to go to a private hospital's emergency room. Even four days of IV didn't kill the bugs concerned and a few weeks later my hand began to swell up badly - I had to have my wedding ring cut off and take very powerful antibiotics which finally? worked. My haematologist is concerned that it could still flare up again.
When it comes to infections, we aren't like normal folks and there are times when we need a CLL expert to make certain that we have appropriate and timely treatment. For that reason, hospitals are not good places for us - that's the best place to be exposed to illnesses which we may struggle to overcome. Make certain that whoever you see for medical support does all that they can to keep you away from them.
I'm impressed that you are teaching and hope you can continue to do so given your higher risk of workplace infection. I hope all the pupils in whom you've instil the importance of hygiene, later recognise how much what you've taught them has saved them and their families from miserable days of being unwell.
Neil thanks! I'm teaching because I need the money, I need to be off due to the stress of this class! But seriously I am stunned at overall minus starting Friday, how "healthy" I have been considering my #'s have been lousy. I guess it's because this class is constantly coming in from recess and asking to wash their hands and even though it annoys me that they wait of course I let them!
I think my issue with the Dr. I currently see is that it is a teaching hospital. But my understanding of most of the ones around my area is that they all are. I also don't think we have private ER's here. There is one urgent care I can go to where the wait isn't hours. The whole thing that surprises me is that my GP is usually AMAZING and will FIND an answer. The fact that she called in a pain medication for me and wanted me to just go see the Oncologist (knowing he's an hour away) instead of trying to figure out what was wrong surprised me. But we'll see. I sent him (Oncologist) another email in case he gets that first but I am going to ask what to do in case of emergencies because I KNOW the ER's here can't handle me, they'd make me sit for 6-7 hours. Like I said my roommate sat for 5-6 hours AFTER being triaged and AFTER the nurse AGREED that she had a stroke. They are lucky it didn't do brain damage but I kept asking (she couldn't talk!) "Aren't you supposed to give her something ASAP if she had a stroke" and they treated me like a 2-year old. I wouldn't trust these ER's at all....
Went and saw the Nurse Practitioner at the Oncologist's office and she did blood work and everything and it's still "stable" so I am once again "abnormal" re: my CLL (she was expecting my #'s to be off). She was quite surprised re: the bumps and isn't very sure if it is CLL related or Viral but agreed they were of concern. She gave me an anti-viral and talked to the Oncologist, they upped my apt. with him AND are doing a PET scan to see how the Lymph Nodes changed since Nov.; it's going to be a long 2 weeks of waiting and getting more tests done...She said I could go to work or not, she said she understood how hard it would be right now with the pain but it was up to me so I guess I will continue to go until I can't anymore as much as I would like the time off...
Thanks for your support, I'll update after 2/4ish when I know more!
Thanks for the update and encouraging news that your concerns are being treated seriously.
The PET scan won't be as good as a CT scan to detect changes in your internal lymph nodes from just your CLL (they are too slow growing with CLL to show up well on a PET scan) but importantly, a PET scan is better at picking Richter's Transformation, which needs to be checked out.
There's one test in your blood chemistry or metabolic panel from your blood test that may give an early indication if you have experienced Richter's Transformation. It's the Lactate Dehydrogenase test (abbreviated LD or LDH). If you have previous readings to compare your latest result against, then it may be slightly elevated if your CLL is growing faster than usual at the moment and causing those painful nodes. If it is significantly higher, (see Cllcanada's comment below), then it may indicate more than just a more active CLL stage and the PET scan should definitely determine what's happening. If you do have your LD results, bear in mind that it is only an indication and not infallible by any means. It can jump up 20% or more if the blood draw is done poorly - the bruising of the blood cells releases it into the blood plasma giving a false indication - I've witnessed it myself. Then you can have the opposite; Richter's Transformation with no abrupt change in your LD. Not all specialists include the blood chemistry/metabolic panel in their monitoring blood tests either.
Hopefully the antiviral will help and you'll end up feeling fine when you see your oncologist
This is the first time I've had it done. Then my ALC, went up rapidly but then from Dec.-Jan. it went down??? Now I am even more confused. How much can stress play a part in all this? I had blood work drawn in Jan. almost a week AFTER Winter Break so I had just come off 2 weeks of SLEEPING and doing NOTHING!
Thanks! PS Day 2 days of anti-viral the bumps aren't any better
Just looking back at your previous postings and back in September you posted that your ALC had changed as follows:
7th Aug 2014______ALC = 22.6
9th Sep 2014______ALC = 44.7
Given you've gone over the ALC of 30, after which doubling time is monitored by a haematologist to check if you need to start treatment, I'm surprised that this is the first time you've had your LD measured. An LD of 140 looks good, but it would have been helpful to know what it was when your ALC was much lower.
What's your ALC now?
Lots of factors can influence your ALC and it can jump around from test to test, which is why the overall trend is more important than changes between tests.
Sorry to hear that your bumps aren't any better. CLL lymph nodes can sometimes seem to have a mind of their own .
Your ALC has been pretty stable and I'd be encouraged that it has actually dropped 20% in the last month. Your LD is good so I think you'll be fine. By the time you have your scan, I hope you'll be wondering why you were so anxious, with your nodules shrinking or gone! It's best to check these unexpected changes out though. One thing about living with CLL is that you get to expect the unexpected.
One thing about me is I ALWAYS have the unexpected all my life medically! I just want to be "normal" for once! I was really curious about the ALC dropping so much in the few weeks...But I was really curious about it doubling in the month too. Well fingers crossed, I keep having my roommate check them, she said the big one has changed shape, she thinks that's a good sign
I'm confused- the PET scan is just going to show if I have Richter's transformation?
It won't show the difference in lymp nodes from November?
my ALC is 'stable' since Nov. but in 2 years there has been significant growth in lymp node size and #'s; I'm just totally confused as to what's happening, I want to feel better!
Hopefully you can get things expedited, so you can get some answers as soon as possible... the waiting is the worst...
It is usually a combination PET/CTscan, so it will show both node enlargement and glucose tracer uptake in very active nodes...if infact there are any...
If an area of interest is found then a biopsy may be performed to see what is happening under the microsvope... for RT, biopsies are the goldstandard for diagnosis, but sometimes they can't be performed...
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