Just diagnosed but I have lesions on the bone

Hi again RoniZ and welcome to this corner of the Community

I don’t have FL but was diagnosed way back in 1999 with a rare incurable but treatable low grade type of skin Non Hodgkin’s Lymphoma Stage 4a and although my Lymphoma ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

The diagnosis period especially during Covid times is not that unusual for Lymphoma as it does take time and lots of tests/biopsies to find what if the 60 types of Lymphoma this can be. My diagnosis took about 2 years.

FL is indeed a low grade, incurable but very treatable type of NHL. Indeed many people diagnosed with FL may not have treatment for years as it is ‘that’ slow growing.

i have actually talked with others with this presentation and they were successfully treated with chemo and/or Radiotherapy.

Google is indeed a great tool giving 1000 answers but it’s finding the correct and up to date information is the challenge. If I Google my rare type of NHL the information is so out of date as there are some great steps in treatments been made that have not hit the Google feed.

Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Online support groups and indeed a great Lymphoma Buddy Service.

I have been on my journey for over 22 years now and yes I had had some full on treatments but back in 1999 I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in king term remission”...... but after years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream (hit my community name for my story)

Keep posting as we are around to help you through this journey.

Thanks for your response Mike!  I guess I am just a little more “concerned” because of the bone involvement. I have not had the typical symptoms (night sweats, weight-loss, etc.) either. The one study I found online (2017) was was not very helpful as it only talked about “finding” the presentation on the bone and how one round of treatment helped with pain (that I don’t have), but it didn’t talk about the cancer going into remission. 

Hi again, your presentation is tricky but just this week I have been talking with someone else (on another Lymphoma support platform) who has the same thing she has just finished 6 rounds of chemo but scan shows there is still activity so she is moving on to Radiotherapy.

My skin NHL took over 17 years to put me into remission but there is no cure so doing my best to ‘live’ with my cancer and not be defined by it.

I have sent you a friend request. 

Ooh. I would love to connect with her.  Does “there is still activity” mean that there was some reduction in lesions from the chemo? I would love to hear more. 

Also, how does the friend request work on this platform?

Hi again, I am at a family wedding so sorry for not getting back to you.

You should see a red notification near the top of this page or hit 'your' community name and go to 'your' area and see if the friend request has shown up - you need to accept this before we can talk off the main platform.

Hello RoniZ! I have a very similar diagnosis to yours. Low level lymphoma that had no symptoms. They checked on me once a year to keep an eye on it. And then WHAM, I had a bone fracture in Dec 2021. A lesion had formed underneath my lesser trochanter on my femur. The fracture is very very very VERY painful. So, now that I have a secondary condition, my 'mild' lymphoma needs to be treated. It seems I have other lesions on my pelvis and other areas on my femur. They are recommending bendamustine (chemo) and rituximab (immunotherapy) for six months. I haven’t started yet and found this group in hopes of calming some of my deep fears about having chemo. Did you ever get a treatment plan? I can tell you from experience…bone lesions can cause life-altering problems. I am housebound. No car. No steps. No yard. Using a walker. Heck…even that little 4” tile lip on the shower is Mount Everest for me. I have a caretaker here on weekdays while my husband is at work. And my husband has had to step up and do EVERYTHING around here. I am usually the one who takes care of everyone and everything, so this has been a very hard adjustment for me.

Hi SeVen,

So sorry to hear about a strong capable woman having to cope with such inactivity.  It is the most frustrating thing about being ill.  My husband was great, apart from laundry and bed making, but a willing partner is a great support.

I had a similar bone lymphoma (grade 4) in my pelvic bones and had the same drugs are they plan to offer you back in March 2019.   One good thing I can share is that the chemo they propose for you is excellent and the side effects are not bad:  just tiredness, low immunity and aching bones where the cancer is being attacked.  It is very effective!  My first course was in March 2019 and it's been in complete remission ever since. The disease was almost gone after just 3 treatments. 

My cancer team are very careful and I get 3 monthly checkups and the odd scan, but I feel well and manage housework, exercise and gardening with ease.  If it ever does come back, I hope to have the same treatment again because it wasn't traumatic.  Follicular lymphoma can recur, but it is treatable and the research shows that we can lead long healthy lives after treatment. 

My weak bones were diagnosed recently, though the lymphoma was implicated.  I know a fall could put me back in orthopaedics for something complicated, so I'm not proposing to take up parachuting or skiing.  They can reverse bone weakness to some extent with the same drugs they use for osteoporosis, so there is some chance they can help us, but I guess your lymphoma will have priority right now.

I hope you feel better and stronger soon and that your treatment goes as smoothly as mine did. 

Cecren

Hello SeVen,

sorry to hear that you are struggling. 
A lot has happened since I first posted 4 months ago. 
it was determined that I had no lymphnode involvement and that the lymphoma only presented as sclerotic lesions. It wasn’t in by marrow and my bloodwork was decent. 
The clavicle lump was actually bone + surrounding tissue. 
i had a biopsy of the largest spine lesion and it came back as not cancer. My oncology team still thought it was cancer (albeit at a very early, undetectable stage) and wanted to treat me with bendamustine and retuximab (like what your oncologist suggested). This is the most popular first line treatment with minimal side effects and no hair loss. 
My other option was treating just the one lump on the clavicle that we new was cancer with radiation.

I ended up just doing radiation, as I only wanted to treat what was cancer for sure. I had 15 rounds of radiation before Christmas. I will know how effective it was at my next PET scan at the end of February. 
They did another MRI of my spine early January and saw that there have been no changes in the lesions. They still don’t know what they are but at least they are not growing. 

My lesions are sclerotic not lytic, which means that they add to the bone, not weaken it. If they grew too much, they could press against my spinal cord, which would affect my mobility, but they are not weakening. 

There are soke great groups on Facebook: Living With Follicular Lymphoma and Lymphoma MD Answers, that have been really helpful. An oncologist actually answers your questions on the second one.

Good luck! I know this is a challenging time, but lymphoma is highly treatable.  
You’ve got this!

take care,

RoniZ

Cecren, Thank you so much for your response and sharing your experience! This website has been a Godsend for me! My doctor gave the diagnosis and treatment suggestions last Wednesday and is giving me some space to process all of this. Thankfully, he is a very kind, patient man and tolerates that I’m ‘alternative’ and really struggling with the thought of chemo. I will be calling him tomorrow to ask some questions, and, maybe, just maybe, I might be scheduling my first dose. My husband will be exceedingly happy!

RoniZ, Thank you for responding and for sharing your update! YOU are the reason I found this whole wonderful community! I did a general search engine request for lymphoma and bone lesions. Your post in this community popped up. The rest is history. I’m here and am learning so much and am getting so much love and support!

I am finding that bone lesions and lymphoma are not really common. I dont know much about radiation therapy, so I dont know if results are somewhat immediate or can take time to reveal an outcome? I’m praying that your follow-up scans will give you some much-needed good news. I also dont know much about types of lesions. They didn’t even biopsy one of mine. They made an educated guess, I suppose, according to the node biopsy and the CT scan results.

And thank you for the Facebook group recommendations. I quit Facebook over a year ago, but it was mostly because I felt I was just wasting time and life with endless scrolling and scrolling. But to find a useful group that will help me, that will be worth sneaking back on!