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Introduce yourself to the others in the group

Introduce yourself to the others in the group

Posted by Dinooo on Oct 19, 2020 6:21 pm

Hello everybody,
Pretty humbling to read all the threads and sure is nice to know there is a group that I can share my experiences with.
I am a 50 year old male who has non-hodgson low grade B cell . 
I just finished my 6th and hopefully  final round of chemo (bendamustine and rituuximab) I had 3 or 4 enlarged lymph nodes behind my stomach in the lymphatic system and it had spread into my bone marrow.
I won't know till I get a CT scan in middle of November how effect the treatment has been. It seems to have been fairly effect on the bone marrow front as I was getting weekly blood transfusions, and haven't had to have one in over three months (yay) The red blood cells are finally going up on there own!

I just have a question that I was hoping people could help me with....

Both my calf muscles twitch constantly at rest. This has been going on for at least 2 years . I got diagnosed with the disease 6 months ago . This is a very slow moving disease and nobody knows how long I could have had it. I was super tired and short of breath for about 6 months before (thought it was just stress) The only reason we found about the cancer was my doctor ordered some tests as I was turning 50.LOL
Sorry, I didn't want to get into one of those long boring emails, I will try to keep it short...

Has anybody had symptoms like this. Sometimes I think I may just be crazy. LOL


Re: Introduce yourself to the others in the group

Posted by Wendy Tea on Oct 19, 2020 7:01 pm

Dinooo‍  Great first post! If you have time while you wait for a reply, you can browse through Treatments and side effects under Forums. 

Re: Introduce yourself to the others in the group

Posted by Dinooo on Oct 19, 2020 7:36 pm

thank you

Re: Introduce yourself to the others in the group

Posted by Indigo10 on Oct 24, 2020 3:47 am

Dinooo‍ hi hmm I was just diagnosed this summer after having symptoms for years. I developed a cough that wouldn’t go away then starting vomiting and losing weight and was Then finally diagnosed with splenic marginal zone lymphoma. 
i too have experienced twitching in my calf muscles. I could actually sit and see it twitch. I thought it was neurological but really just knew I had a few symptoms that were ambiguous. This happened pre diagnosis so was not related to any chemo. I also was experiencing sudden loss of energy on my walks. I had been extremely fit at that time so it was an unusual symptom that I mentioned many times to my doctor.  Getting back to the twitching I presume it is related to some form of anaemia but my research will resume
i just finished round 2 of Bendamustine and rituximab and experienced severe lower back pain that didn’t lift for 2 weeks. It started day 3 after chemo but I thought I must have irritated a muscle or disc. I usually develop joint pain after chemo. I wonder what it is injury vs chemo. I thought I read in one of your posts that you experienced back pain post chemo. Please  let me know if you did. Well it is now 2:45 am and I might be able to go back to sleep. keep safe. Elizabeth

Re: Introduce yourself to the others in the group

Posted by Dinooo on Oct 24, 2020 5:53 pm

Hello Indigo 10,
Thank you so much for the response. It is comforting and helpful that someone with same disease has had/(or shall I say is) having the same twitches.
I went and saw a neurologist last week and after asking a bunch of questions and sticking a bunch of needles in my muscles and putting a bit of electricity to them ( It felt like a mild for torture, LOL) He said I didn't have any muscle wasting disease. Ahh good news!!!
You brought up a good point about being anemic and this could be a side effect. My red blood cell count was at 137 and slowly climbing which I haven't been this high for a year probably. The twitching is still happening although maybe it is getting less and less. This is what I am going to tell myself anyways and hopefully that will make me quit working about it.
My hips, knees and legs have been pretty sore the last couple weeks. I am trying to find the balance of getting some exercise(walking) and not overdoing it where I am in pain and have to spend the rest of the day sitting down with my legs stretched out...
I did experience a bit of back pain in the first session of chemo and now with the last 2 sessions I have felt lower back, knee and hip pain. One of the nurses told me chemo can be a bit of a b***** and make old injuries flare up.I hope it is the bone marrow getting back to normal and not old injuries "flaring up"
How has your chemo been going? 

Re: Introduce yourself to the others in the group

Posted by Indigo10 on Oct 25, 2020 1:06 pm

Dinooo‍ Hi there I tried sending you a message a few days ago but perhaps composing and sending messages at 2:30 in the morning is not the best idea. I sent your message to someone else , who very nicely said , “ I don’t know how to respond to you” . Hopefully there are no alerts out there about Indigo10 😊
I have NHL (splenic marginal zone lymphoma) which I understand is rare and different from your diagnosis but I was intrigued by your description of one of your symptoms , calf muscle twitching. I had this too and was baffled. I was diagnosed this past July but had been experiencing ambiguous symptoms for years. The muscle twitching occurred about 18months pre diagnosis so I know it was not chemo related. I still do not have an explanation except that I am theorizing it maybe I was anaemic because of the lymphoma and my muscles were tired resulting in twitching. Pre diagnosis I was not thinking blood related disorder at all , rather I was thinking it was neurological. 
I have now completed 2 chemo treatments of Bendamustine and rotuximab and my spleen has been significantly reduced yippee Kai yay.  I have Unfortunately had significant challenges with the chemo. Severe joint pain in my jaw , wrists, shoulders after chemo #1 followed by extreme pain in the muscles of my legs making it impossible to stand. Weirdly walking was not so painful but once i started to slow down it ratcheted up. 
this second treatment was difficult because of severe lower back pain. I could barely move without being struck with severe pain. In fairness, I am not convinced it was the chemo as I may have hurt myself at the chemo treatment trying to get off the recliner. ( why ask a nurse for help when you can struggle for 10 minutes to do it yourself). I am not sure I impressed anyone with this feat  of self reliance and paid a high cost emotionally and physically.     
I hope I have been informative but know I injected just a wee bit of whining. This for some reason helps to make me feel better 😊

Re: Introduce yourself to the others in the group

Posted by Dinooo on Oct 25, 2020 1:30 pm

Hi Indigo 10,
I did receive a email from you a few days back. Thanks!!!
I never understand these forums, I sent a email yesterday and hopefully you received it.
It sounds like I got off fairly easy with my chemo treatment. I am sore still but it seems to slowly be going away. I try to get out and walk a bit each day and keep the blood flowing.
It sucks that you hurt your back getting into the recliner, I can relate as I just get tired of asking people to help me. I just would like to be able to care for myself! Oh well, the best I can do is keep a positive attitude and a smile on my face.