I had a CT Scan last Wed. & received the results of my CT scan but it was through a message so who knows when I'll be able to ask the Dr. my questions. But based on this statement "extensive lymph node enlargement essentially in all of the lymph node areas" could this be why I am "sore" in areas?
I am seeing a new CLL Dr. (my insurance no longer covers Stanford & I just couldn't make the trip to UCSD anymore).
I am so exhausted and know that treatment is coming soon (the dr. in San Diego was ready in June & now this Dr. is saying probably soon based on the CT scan & the blood work) but in the meantime I am so scared...I am always tired, I have tried so many things that people have suggested on this board (Including extra vitamins!) , I am sore often, I have no motivation for work which after having a week off for Thanksgiving I have to put on a happy face and get ready for tomorrow....
I just want to know WHEN and WHAT to expect. This Dr. said that they have no trials (he's at UC Davis) and that it would probably be "soon". My next blood test will be this week or next depending on when I am motivated to go, then I don't see him again until Feb.; in the meantime I am supposed to get an apt. for a small thyroid nodule and another apt. because my pulmonary artery was enlarged.
Not that I have a clue what either of those things mean...
Okay vent over anyone wanting to share advice/experiences/tell me if my lymph nodes being large could be why I am sore would be great!
Thank you!
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rlyndecker
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I wish I had the answers you seek, opinions don't do the trick. I really hope that one of our community who has suffered in the same way will soon be along to share their experience. However, I could not help replying as nothing is worse than when no replies are forthcoming and one can feel so isolated. |My nodes are only small and it's one in my neck that annoys me, but nothing as bad as you are experiencing.
Rlyndecker, I'm sorry to hear that you are going through a period of unsettled uncertainty with your CLL at the moment. Being unable to know what to expect and when is one of the hardest things about living with CLL I find. We are all so different in how it affects us. Realistically I think that all we can do is find techniques that help us live more comfortably with uncertainty.
With regard to your exhaustion, read what Professor Terry Hamblin said about fatigue in general and how poor our understanding of it with CLL really is. Not much has changed in 8 years unfortunately:
You also mention needing an appointment for a small thyroid nodule. Given your thyroid function can dramatically affect your energy levels, have you had that checked to confirm your thyroid is working normally?
Could you elaborate on where and how you feel your soreness? My neck nodes get very uncomfortable at times which I find very wearing, but thankfully it has been a while since that happened. Perhaps some of your nodes are pressing on nerves?
I hope this reply finds you in better spirits than when you posted.
I feel sore on the Left side of my neck (if you're facing me). I have been referred to a cardiologist and endo??? for the ultrasound. I forgot what my regular dr. said. I feel like I'm always been referred to someone else. I'll post again soon, I just got home from a long day at work and beyond frustrated that I have 2 more apts. that I'll need to make...
I feel like this could be my FT job!
Thank you for the replies. I'm just not good with "watch and wait".
Rlyndecker, if we are honest, I don't think that many of us are good with watch and wait.
Sounds like you'd do well to have someone with you during your medical visits or ask if you can record the appointment. The endocrinologist would be the specialist for your thyroid investigation, so with the cardiologist, you have both the other non CLL issues covered.
Your left neck soreness could well be due to your neck nodes. If you gently feel around where it is sore, can you feel any swelling there, perhaps more than on your right and is it sensitive to pressure? Is it any worse when you turn your head to the left? This is something that your doctor should have checked. You may get some relief from a heat bag held against the sore area (for me it was in the line under my chin to the base of my ear from memory), and if it gets too bad, perhaps some pain killers. I feel really off when it happens to me and it really gets me down as it just goes on without relief for up to several weeks. I found it very enervating despite the swelling not being obvious to others.
My roommate always goes with me to specialist apts and my oncologist apts.
I'm just feeling down because I'm not happy at work as it is very stressful and I don't have a choice (long story) right now. I made it back because of money.
I do have swelling but it's frustrating because I've been complaining forever and no one does anything about anything....I'll try a heating pad.
As far as I know they are checking on the Thyroid and the pulmonary artery for now and that's it. I'll probably go for blood work next week sometime and see what happens after that.
An underactive thyroid gland can make you suffer badly from tiredness. This can be put right with daily throyixne tablets. I have taken them for a long time. Need can be determined by a blood test. It could just be the answer. It will not help with cll tiredness though. Coping with cll is difficult but somehow we carry on. My best wishes to you.
Firstly my wife suffered with a thyroid problem many years ago this also made her very tired and unfortunately for me she was also very irritable, very down and argumentative lol. So make sure you get this checked out.
With regards to the cll I was told last December (2013) that bloods had worsened and I was near to treatment. Been attending appointments every 4 weeks since then and each time Dr says on the verge of treatment what do you want to do? All so very frustrating waiting and putting my life on hold to a degree as I can't plan anything so I understand your concerns. As far as lymph nodes are concerned they can become quite sore as they store more and more Lmphs mine also raise when I get an infection such as a cold and I honestly believe if you are feeling down that the body reacts to this depression and in your case maybe the stress doesn't help?
If your next appointment with your cll Dr is February? Then they can't be thinking treatment is urgent so, like me make the best of the reprieve and do get the other things sorted I was seeing a cardiologist recently for AF and they found a calcified aortic valve yet another thing to be taken into account when my chemo starts! But it is essential you are treated holistically when the time comes.
Keep your chin up, thier are many much worse off than us!
Hi rlyndecker - I too had extensive lymph node enlargement. Experienced no discomfort unless I had an infection. Eventually, however, I began to have pain especially in my groin and neck as a result of growing nodes pressing on nerves. With blood results also becoming a concern, I eventually commenced treatment.
Now post treatment nodes have shrunk to normal size and I no longer have any discomfort. One of the blessings of treatment!
This was my personal experience. Glad to see you are under the care of a CLL doctor. Perhaps, following your blood test this week, you could ask for an earlier appointment. Meanwhile, keep in touch if you feel able.
Brad7 I have great empathy for all the people suffering with cll , Ive been on w&w for a year now and except for low motivation and fatigue Im still in a position to not need treatment, its my ankolosing sponderitis that gives me great pain.Im aged 68 and i try to work at understanding blood counts , Im thankful of my reprieve from needing treatment with cll.
I have blood counts every 2 mths, I must be like the a many others who visit this site with the information it gives making us aware of our vulnerable position.So many must be on w&w and feel like me have very little post about
I lived in SF East Bay and worked in Sacramento both times I needed treatment (2010 & 2012) and fatigue plus muscle cramps were my primary issues. I had enlarged nodes and bouts of depression also.
So I would answer that CLL is likely the direct or indirect cause of your soreness and fatigue. Both times I started treatment those problems disappeared in the first month, so if you are having problems, I suggest you start pushing your new doctor to start treatment to resolve your fatigue and lymph node issues so you can keep your life together. Imbruvica or Zydelig would be great choices, if your new doctor and your insurance company agree and will cover the cost in your specific case.
I went to Stanford but did not get much support there. I understand that UC Davis has a good CLL expert, but I never went there.
You may want to ask the UC Davis medical team to help explain and coordinate your other appointments for the thyroid and pulmonary artery, I found it very helpful to get everything done within the same hospital and medical records system. My doctors communicate and coordinate my treatments very well.
Hi rlyndecker...I had treatment last year I had quite a lot of enlarged lymph nodes all over neck and head too. Also huge egg size nodes under arms. But these really were the result of influenza virus. They wouldn't go down so after 3 months it was decided to have The Treatment... 1 year later I still get sore occasionally under the jaw line most annoying and also in the neck ..even after chemo the cells still seem to lurk about in the lymph. A hot pack is comforting and does relieve the discomfort. I find I get fatigued only occasionally when I've really over done it. Then I rest or even go for a gentle walk. Or sit quietly and meditate. Once you've got your thyroid problem sorted I think you will feel easier. That's easily controlled with medication. So be kind to yourself. I've had to learn to do that too.
Hi rlyndecker...I had treatment last year I had quite a lot of enlarged lymph nodes all over neck and head too. Also huge egg size nodes under arms. But these really were the result of influenza virus. They wouldn't go down so after 3 months it was decided to have The Treatment... 1 year later I still get sore occasionally under the jaw line most annoying and also in the neck ..even after chemo the cells still seem to lurk about in the lymph. A hot pack is comforting and does relieve the discomfort. I find I get fatigued only occasionally when I've really over done it. Then I rest or even go for a gentle walk. Or sit quietly and meditate. Once you've got your thyroid problem sorted I think you will feel easier. That's easily controlled with medication. So be kind to yourself. I've had to learn to do that too.
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