New member

[Andilynn]

Hello,

I joined to learn and share information on the following topics: splenic marginal zone lymphoma, Paget's disease, peripheral neuropathy and chronic pain.

[Shar0n Volunteer]

Welcome, Andilynn _ how long since you were diagnosed? Is the peripheral neuropathy an after effect of chemotherapy? I hope you will be able to share with someone here who also has splenic marginal zone lymphoma. I have follicular lymphoma and am on watch and wait since surgery in 2014.

[Andilynn in reply to Shar0n]

Shar0n, I was diagnosed in fall of 2014. I was feeling fine at the time, but routine blood tests were not good. I also had a big abdomen and looked like 4 months pregnant. This was from a massive spleen. Rituxan brought that down to normal size. My neuropathy started a year or so before that and I believe it is due to statins.i had extremely painful feet. Lyrica twice daily has kept that under control. A bone marrow biopsy to dx the lymphoma has left me with chronic lower back pain (long story) and I have neck and shoulder pain. I don't do well with physical therapy, so I will be giving acupuncture a try as soon as they can get me an appointment through my oncologist.

I hope your condition remains stable and that you're doing okay.

~Andilynn

[laylalulu in reply to Andilynn]

Hi I too had a huge spleen my doctor chose to remove it, so you have not had your removed? That was it for my treatment so far bloodwork shows good results. I had 50% bone marrow involvement but I was reading here that there has been higher. So that's positive. Also 1 or 2 nodes but cat scans lately showed no involvement there either so I'm feeling pretty elated about it. Good luck!

[Andilynn in reply to laylalulu]

I was stage 4 at dx. with bone marrow involvement and multiple nodes in the chest and abdomen. Rituxan brought the spleen down to normal size and took care of all the lymph nodes. I think it's a miracle drug! My doctor never suggested removing the spleen, but I have read that it's another way this is treated.

[Calipewings_2016]

Welcome. I have nodal marginal zone. When were you dx? I was in December, I'll have my 3rd tx on the 13th/14th. So far I'm doing good.

[Andilynn in reply to Calipewings_2016]

Calipewings_2016, I was diagnosed in fall of 2014 after routine blood work looked bad. I finished the maintenance therapy with Rituxan in October. This week I had multiple blood tests run which I expect to be fine. I meet with my oncologist (New for me because of insurance changes) next week to review the blood work and recent CT scans. I should be good to go for six months after that. Keeping positive You keep doing well - best wishes!

[laylalulu]

Hi Andilynn, I have splenic marginal zone too. I will be on watch and wait 3 years in September and feeling pretty blessed. How are you doing? Have you had treatment with chemo? Hope your doing well!

[Andilynn]

Hi Lalalulu, SMZL is so rare - we are sisters in this journey. I was diagnosed in fall 2014. The oncologist recommended immediate treatment, so Rituxan was given for four weeks in a row. That was followed by Rituxan infusions every two months for a year, then every three months for a year. Due to insurance changes, I had to switch oncologists this year. The new one ordered full body CT and loads of blood work. I suspect that will all come out fine. I do suffer from chronic pain - lower back, neck and shoulder. Because of this I will be starting acupuncture through our cancer center. I'm not sick or tired anymore, just sick and tired of being in pain. (If that makes sense!)

Wishing you the best. Please keep in touch!

~Andilynn

[laylalulu in reply to Andilynn]

Yes our cancers are rare, I go to see my onocologist in march. I just finished a catscan a few weeks ago I felt like there was something happening in my neck and my breathing was short of breath , the scan came back showing nothing wrong so that was great news. A cyst showed up in my pancreas that makes me nervous but my GP doesn't seem concerned, waiting patiently to see my onogologist. There is nothing worse than chronic pain andilynn, wishing you the best

[Andilynn]

My original oncologist told me when diagnosed, that SMZL is treatable and manageable, but not curable. My new oncologist, who I saw for the first time last month, said that with the initial treatments and maintenance therapy, it is curable. I would be interested to know your oncologist's opinion on this.

[laylalulu in reply to Andilynn]

At the time of my diagnosis he said the same as your first onogolocist, very treatable, but no cure maybe things are changing. I am hoping the immunotherapy works out . I have a friend who's dad had advanced melanoma and he is doing well on this. Knowing not all cancers are treated the same still it gives us hope for new cures and better treatments . Have a good one!

[jetrueba2004]

Hello I see this is from 8 months ago I was wondering how you ladies are doing now. I am 32 Inwas just dx with smzl doctor said the same thing as your onc not curable but treatable and look like a lifelong chronic disease like diabetes. I hope you are doing ok let me know if your new doc andylin still thinks this is curable and what is the treatment. Thank you

[skinkade]

Hi, just wondering if any of you folks diagnosed with SMZL are experiencing any issues with skin rashes? I was treated with Gazyva last year and am feeling good, but a lump appeared on my face/neck area and i had biopsies to determine I've relapsed recently. My blood numbers still look good, platelets are normal, but now this skin rash is driving me crazy.

[Andilynn in reply to skinkade]

Hello Skinkade, I did not have skin issues with my SMZL, but have a friend on watch and wait SMZL that has been dealing with very painful skin issues. After seeing different doctors and having biopsies, her oncologist said it has nothing to do with her SMZL. I hope you can get a good diagnosis and some relief for your problem. Andilynn