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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

Thanks
 

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

OK,
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? 
Cheers
Dean
 

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.
Cheers
Dean