So I posted a couple of weeks ago right before I had Surgery - Thanks to all of you who were so great in helping through that rought time and all the stresses of pre-diagnosis.
WELLL>>>>> I had a Thumb size tumor removed from my left Parotid and turns out to be Non-Hodgkins MALT lymphoma.
I have been on a total roller coaster ride and to doctor appointments after doc apt. for more test.
PET - scan showed only localized Cancer cells in that Left parotid and Larynix - WHEW!
I had a bone Marrow Biopsy - That was Negative for Cancer! WHEW!
I had my stomach scoped yesterday - and am waiting on those results should be back later this week.
Tommorow I am having my Dentist sign off any work needing to be done so I can begin Radiation treatment.
I am so "lucky" to be in the 5% of SjS people that develop Lymphoma.
As long as there is no Lymphoma in the GI Tract then I will begin the 4 weeks of Radiation treatments.
I have been told that the Radiation will have no Systemic affects that i will just get a Very Sore throat and dry mouth - Nothing new there! - and by the time the 4 weeks is over my skin will just be starting to get red and burn.
Has anyone here ever had any Auto-imune disorders and had to undergo Radation treatments?
Or been diagnosed with MALT - Lymphoma? So far mine apears to be in the parotid but we are stil waiting on the GI Biopsy.
I am very worried about how this will affect my other diseases - Lupus - 2nd Sjogrens - Raynauds Phenomenon.....
I am already tired from the Surgery recovery - and have my bad days with pain and inflamation especially around my right kidney - so i am trying to prepare myself for what is to come.
I work full time and am feeling very guilty about taking two weeks off during the radation treatment. If i get extremely tired it will become more - I am so luck to have job security - i am the only person in my company that knows how to do what i do and i save them lots of money - but know i will be comming back to lots of work! So my time off always comes at a price!
I have 3 kids that do help me out and an AWESOME husband that cooks and cleans and lets me cry when i am scared and goes to all my major appointments with me so i count myself luck there!
Anyway - any advice from you SJS survirvors would be greatfully received! ;)
Hi, Kjerstadj
I'm still new to this SJS thing , Raynauds and who knows what else. I just wanted to pass on that my thoughts are with you. Good luck with your results and treatments. Keep us posted.
Sending you a big hug,
Leslie
Hi kj......
I have Sjogrens and was diagnosed just six months after that dx with breast cancer. I had lumpectomy and radiation x 37. My radiation was, of course, pointed at the breast with the cancer. I didn't have very bad skin problems, they give you soothing stuff to use.
I must say that fatigue was the max with me. We can't tell that will be the case with you! You are much younger than me, for example. I see your post about being one of "the lucky 5% of Sjogrens who get lymphoma." That is sort of how things are explained with cancer. With my breast cancer, we were lucky we caught it early, I was lucky because it was a certain type of tumor, and at the end I was just overjoyed to have cancer. NOT.
I have a good husband as you do, too and that is a big help. Your kids will help keep your mind on other things. It sounds like you are a trooper and you'll get through this just fine. Stay tuned to us, there is a ton of support here. During my cancer treatment, I posted about it lots of times and people were just so supportive. You'll get the same here. Lucy
Hi Kj
I'm sory you are having so much to deal with just now. As Lucy says, you will get lots of support from your Sjoggie friends, so just come here when you feel up to it, and we will give you lots of psotive vibes and cyber hugs when you need them.
Keep your chin up.
Kathyx
Hi KJ,
I have Sjogrens and on Christmas Eve morning this past year had an abdominal ultrasound which revealed a large tumor on my left kidney. On Jan. 15th, they removed my kidney along with the tumor. I'm told I have a good prognosis but, boy, do I know how that diagnosis can just rock your world. I will pray for everything to go smoothly and for a good recovery. I know it is so scary. I hope we can help you through this terrible time.
Anna
Hugs KJ!!!!
Yes, I've had MALT lymphoma in my parotid gland. Surgery, chemo, radiation.
Four hundred million tests.
Lots of education and worries.
I'm at your disposal.
Great news about it being limited. Even if it's not, don't panic. It's easily treatable.
Good news about MALT: Its super slow growing and super-survivable. Really, if you've look at the stats, most people who get this are in their 60's and ten years out 90% of them are still alive. (Which I think is good for any group of 60 yr olds)
Radiaton thoughts: How many grays are they treating you with? The standard dose is 30. If it's more, I'd ask why.
The biggest pain in radiation is getting set up. Expect another CT scan (because you just can never have enough of those) and then you'll be fitted for this semi-rigid mask thing, to keep your head perfectly still and make sure you're irradiated in the same place every time. It's kinda like a fencing mask, except it snaps onto the table on which you'll be laying.
Treatment itself is very quick. Waltz in, lay down, get the mask thingie put on, the table is moved into position, and the radiation itself is about a minute or so. Tech comes back, moves the table down, unhooks the mask, and you're done. Once a week they'll do a little interview, check how you're doing. Take blood. Fun stuff like that.
Now, like you, they promised me there would be no side effects or pain. I can't think of any other way of phrasing this: That was a lie. I had quite a bit of pain in my jaw and a lot of fatigue. Also my skin was pretty toasted by the end. I don't know if it's Sjs that made me have such trouble, but it wasn't fun.
Get lots of ointment for your skin. Calendula gel has been clinically proven to help.
Other thoughts: You might want to visit http://www.lymphomation.org/ which is a fantastic resource for patients and lets you read all the recent medical studies on this. (I'm one of those people who needs as much information as possible)
Talk to your medical oncologist about Rituxan. There is a study out there that found that Stage 1 & 2 MALT patients that are treated with both radiation and rituxan have a significantly lower rate of relapse, plus, Rituxan is a really useful drug against Sjs.
Now that you're on the lymphoma train, you're also going to have to have your Rheumy evaluate your medications. Some of them have increased risk of lymphoma as a side effect and so they're no longer going to be part of your current or future treatment plan.
Finally, don't be embarrassed to ask your doctor for help in the area of mental health. Cancer does a real number of your sense of self and most people who have been through it fine themselves clinically depressed afterwards. Having some heavy duty chronic diseases is not going to help the picture. After my treatment I was depressed, and a year of antidepressants and therapy was necessary.
Please feel free to ask any questions you have. I'm more than happy to talk about my experiences or just listen to what's happening with you.
All the best,
Heather
Hi KJ thoughts and prayers are with you. Hugs and Kisses Jonnell and Jenna
Hi KJ :)
I'm so sorry to hear that you are one of the 'lucky' few. :(
I've heard that they can target radiation much better than they used to be able to and also that it tends to have less side effects than chemo.
I know a cousin of my husbands had radiation when she was only about 9 and it was much more hit and miss that it is now. She had bone cancer in her arm.
She's now in her late forties with 3 lovely kids and her cancer never recurred.
Best of luck through this difficult time. I hope you can find ways of relaxing during them to try to minimise the stress that you are obvioulsy under.
Take care - Scottie :)
My thoughts and prayers are with you. I have not experienced your diagnosis and I am sure you are worried. Remember that you have people here who understand you...
Just wanted to add my thoughts and best wishes over the next few weeks KJ. It's a tough thing to remain positive but I hope you will post as often as you can and feel free to share all the bits you can't or don't want to say at home. Good luck - everything is crossed xx Ailsa
Hi KJ
Glad you came here to share your news. I'm dreadfully sorry this has happened and I hope we can offer support and love as you go through the treatment. Heather's post was so informative and honest; it will be great to have someone to tell about the stages of treatment who will really empathise.
You are very blessed with your family - a husband who cooks and cleans is one to be treasured! One who holds you when you cry is a jewel.
Thinking of you - Chickpea
how frightening. I'm sorry this is happening but glad it was caught..
best wishes
KJ,
Sending many prayers and thoughts your way. I work in two areas of my hospital and one is in the Cancer Center. I have met AMAZING people of all ages and walks of life. Stay strong...you seem to have a great attitude which I swear can cure any cancer.
Take Care!
Vicky
KJ,
I understand how overwhelming and unreal it feels to be diagnosed with lymphoma. I remember thinking that my body had betrayed me.
As Heather told you, this stuff does respond to treatment! Mine has been in remission for over 9 years!
Follow the advice of those who reminded you to stay positive! Please keep us posted, and know that you are in my prayers.
Hugs,
Cheryl
KJ, You are very fortunate to have a good support system at home. Good luck with your treatments and my thoughts will be with you. Roxanne
My rhumy contacted me and asked to see me much earlier than the previously scheduled appointment. She wants to send me to an oncologist as many of my Sjogrens symptoms are standard lymphoma symptoms. I guess I'm a bit scared. I haven't even had the liver biopsy yet that she scheduled for me. I have a whirlwind of appointments coming up as it is. New week MRI scans from my neurologist plus the liver biopsy appointments. Now to worry about possible Lymphoma really puts me over the edge. GRRRRR
Also, for those who have had lymphoma what were the signs if any?
Billydude, sorry your on a roller coaster too, I hope your fears of Lymphoma are groundless! and that the liver tests are negative too..
Along with KJ, reading the posts already sent , there is a lot of comforting issues along with the bad!
I pray you both come out of all this soon, thinking of you both..
Keep the faith, Hugs Dolly.
Oh Steve, you must be feeling pretty overwhelmed by this latest bit of news! Of course you're scared and feel ready to topple over the edge ....
There are some great posts here from people who have travelled the road you may be setting out on. Let them guide you. If your tests are positive try to be reassured by the good news you'll find, as Dolly says. If they're negative then it won't have been a wasted experience: the tests will establish how SjS is developing, which of your organs need extra vigilance, and what meds are most appropriate.
Post lots and let us know how you are feeling. You've always been so strong for the rest of us, maybe now is the time to lean on us a bit and let us take care of you.
Thinking of you - Chickpea
Kj and Billy-
My thoughts and prayers are with you both. Please let us know how you're doing and know that we're all here to lend a shoulder or listen when you need to vent.
My very best to both of you, Tracy
billydude, So sorry to hear that you are having so many issues. I don't blame you for being worried but at the same time the lymphoma that goes with the autoimmune issues is generally one of the slower growing ones plus responds well to treatment.
I do't know all the symptoms, but I do know that weight loss, night sweats and enlargement of lymph nodes are some of the common ones. I think that loss of appetite and nausea also goes with it. The lymph nodes in any area can be enlarged. The docs usually feel of the ones behind the clavicle. The docs will ask you to sort of bring your shoulders forward and they feel of the area down deep behind the clavicle. This is the bone that is connected to the shoulder joint and the sternum. I would think others will come and tell you more. Good luck. Try not to let your worry stress you so bad you get a flare in the midst of this ordeal. Irish ;D
KJ and biilydude
I would like to add my prayer and thoughts both your ways.
KJ - keeping you in my thoughts whilst you go through your radiation, wishing you all the best.
Billydude - hope you dont have to wait to long for your tests and answers, i wish you the best, if your anything like me than worry is something im great at. I finding the waiting terrrible.
TAke care - try to lookafteryourselves - find something you enjoy to ease your minds for a while.
Loulou
Steve: Sorry I just saw your post. I was away this weekend:
Lymphoma, at least the type Sjoggies get, tends to be the B-cell, Non-Hodgins type. Which is great, because it's very slow growing and very treatable. So, step one is to take a deep breath.
Symptoms include lumps, (usually on the Lymph nodes, but you can have the extra-nodal varity too, which is what I had. In my case it was in my parotid gland) fevers, nightsweats, weightloss, and itchy skin. Sadly there's a lot of crossover there with SJS, so it's really hard to tell. The bottom line is they will need to do a pile of tests. And then they'll do more tests. And then, a few tests. (seeing a pattern here?)
Let us know how things are going for you, and try and find something to do to keep your brain busy so it doesn't worry you to death. These brains are jst too smart for their own good sometimes. So, learn Russian, read a (long) series of books, watch a couple seasons of a new TV show, take up a new craft- just to keep yourself from going nuts.
Lots of good thoughts going your way,
Heather
I'm most likely overreating as usual. I do have the constantly swollen parotid glands and had a spell no long ago with lumps in them but it passed, I have the night sweats, some nausea, the fatique. Yes, just the usual Sjogrens things but I guess they are similiar to Lymphoma things so we are just being more safe than sorry I think. The only symptom I wouldn't mind a little is the weight loss!!!
KJ,
I am just getting over bladder cancer, the good news is the cancer you have is treatable with very favorable results, but definitely a major inconvenience. It might sound strange, but cancer makes you appreciate Sjogren's, now Sjogren's seems like a pesky little nat.
Billydude, I hope this is a false alarm for you, while it sucks to have to wait for test results, having everything checked out gave me some piece of mind that I didn't have any problems any place else in my body.
Good luck to both of you.