Lately I've been getting jittery and weak and shaky (and almost anxious) later on in the day- seems to be after activity. I had a long day yesterday- longer than my new normal, I should day, and by the end of the day, I was wiped out, shaky, all around just hurting and icky feeling. I have a slight pain in my side- I've been to the doctor. I am sick of trying to get that pain sorted out. Now along with the pain I am just getting the jittery, weak, buzzy feeling (like I had too much coffee). I do not drink any caffeine. Is it possible this is just the body dealing with the tumors- or possible tumor growth etc.? Anyone else having similar symptoms? I have tried to share this with doctors and nurses. Blood tests have been run. No help at all. Doctors did the obligatory tests and didn't really have much to address. These are new symptoms to me since I have been diagnosed. I only remember similar symptoms in the months leading up to my diagnosis- usually occurring by the end of the day after a long day at work or a stressful day.
I wish I could address this. I tried more pain killers and eating but it doesn't seem to really help.
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Where are you being treated? If you are having symptoms similar to your first diagnosis, it seems you should be talking to your CNS (specialist oncology nurse) or bring it up at your 3 monthly check up.
For me, 2 years in from diagnosis, 5 months from Carbo/Caelyx treatment for recurrence, and 3 weeks from stopping Niraparib, the miracle maintenance drug, I still get “buzzy” legs, achy joints, and need bed rest after an active day and especially if I walked up and down a lot of stairs.
It goes away after a few hours of sitting in my bed with my legs stretched out and definitely over night.
It helps to be sociable, with friends visiting a lot and I have a very supportive family.
But, when I told my Onc that I was not feeling as super duper as I had been, she felt that this, combined with a slowly rising CA-125, was cause for a scan.
The long and short of it, is I will be in treatment again.
This disease does leave one worried all the time.
A touch of flu? Or is that the cancer? It does complicate life as we knew it.
Our best way to manage this is to brazen it out, research our best options, discuss with friends and family, and post our questions here.
Thanks. Yes it happened after I I've done a fair amount of activity but it doesn't seem to be going away especially much after arrest so not sure what's going on. That's what I'm worried about is that it might be more disease advancement.
I agree with others that this needs more investigation. A long time after chemo I used to get ‘crash ‘ symptoms if I had overdone it ( buzz in the ears, weak and just wanted to sleep). I have low blood iron and my blood sugar sometimes plummets.
I wonder if a visit to your GP might provide a more holistic view of how you are now? I would pursue the CNS route as well.
Meanwhile...if you can recognise the early symptoms and rest before you are forced to....🙂 best of luck getting it sorted out xx
I agree with others here - more investigations needed. I accidentally found I was anaemic recently -I had felt somewhat "iffy" but didn't realise what the problem was. I full blood screening found the problem. I would speak both to your GP and also your Specialist Nurse.
So sorry you are feeling this way. Very unnerving especially when your symptoms mirror those you had prior to diagnosis.
All the information all the ladies here have given you is great. I just wanted to add that I thought my cancer center was now in charge of my whole body. Not true. They are only concerned with the cancer itself. I went out and found a GP (who I really didn’t get along with initially because I thought she was overly aggressive) who really pulled it all together for me. Numerous blood and urine tests, an appointment with mammo, colonoscopy, bone density and cardiac exam. She ended up prescribing a second blood pressure med and said she was looking into metformin for me (I was pre diabetic) as she had just attended a seminar on how metformin works well with a PARP to starve cancer cells.
She really filled in all the blanks that the center couldn’t help me with.
What you are experiencing can very well be symptoms of an unrelated issue that can be easily fixed.
Sorry to hear of your struggles. I can certainly relate. I would get this strange pain in my side. I explained it as coming from the area of my spleen/stomach. No doctor had an explanation. CT scans showed nothing. I also had a hard time with anemia and my red blood cells. Finally, my lack to thrive alerted my oncologist. She did test for celiac disease. BINGO! I began a gluten free diet and the pain in my side began to lessen and when it returns I know I have been cross contaminated. I don't fit the usual profile for someone with Celiac, but it was confirmed with tests. I still have anemia, but no longer severe and I am still monitored monthly with lab tests. You might try doing some research on Celiac. It is an autoimmune disease. Mine was inactive until I had the trauma of surgery. Sending big hugs for better health.
Weak yes, jittery no, you need a cat scan. That should show whats going on. Are you in the UK? If yes you will have to really push to have a cat scan. Try to find a female Dr, more sympathetic to the needs of women, also see what your ca125 test results are. If you are in the US, go to city of hope, in Duarte, CA.brst wishes, ❤❤Liz
What is City of Hope? yeah the jittery feeling kind of threw me for a loop. I am in the US and I'm on avastin right now and my numbers have been going up but the CT scans at least the last 3 months ago haven't been showing anything significant so I began to get a little concerned.
my personal dilemma is that I am going on a trip to Israel in less than 10 days and I am not going to be giving that up no matter what. So I'm kind of concerned that if I bring anything up with my doctors and everything is absolutely clarified as problematic that when I hit on my trip the insurance can say that there's a problem they don't have to pay for it, pre-existing condition etc etc. So I'm just going to share a little bit with my nurses get the feel for that go ahead and take the cat scan that I have settled and prepared for on Friday of next week and then deal with it when I return.
I appreciate all the feedback. I probably would not have taken this as seriously as everyone is suggesting. And I suppose being more serious about it his so much wiser choice of action than blowing it off!
Are you on any medications like a parp inhibitor? I would definitely go to oncologist and get a scan. I do remember at one time feeling jittery but I dont know if it was during treatment or after. Get some more info from docs for sure
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