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Diagnosed with B cell non-hodgkins lymphoma

dtat67's picture
dtat67
Posts: 5
Joined: Oct 2018

Hi everyone - I am 68 year old male living in Central Texas and this is my first post. I was diagnosed Sept. 21 with NHL. I also was diagnosed with non-muscle invasive bladder cancer about 2 years ago and after a couple of TURBT surgeries have had a total of 18 BCG treatments (Immunotherapy) with no recurrence so far.

Around March of this year I felt an unusual pressure behind my right eye. I went to my Ophthalmologist and she check my IOP and optic nerve and everything seemed OK. The pressure didn't go away. In July my right nostril became congested. I used Afrin and it seemed to clear things up so I used for a couple of days and then switched to a nasal steroid with pretty good results. A few days later nostril completely stopped up. I lost my sense of smell and taste (taste came back a little a couple of days later - no smell).

In the meantime as part of my 3 month visit to Urologist I had a PSA that came back 5.09 which was almost double from previous one. So he put me on 30 days of Bactrim to see if it cleared up (probably from either the frequent catheter insertion or BCG treatments) so I figured I would wait until finishing that to pursue the sinus issue. The PSA went down but didn't help sinus blockage.

I went to ENT Doc, he did a examination and said it looked like I had a large polyp that was blocking my nostril The CT showed I had a tumor in right maxillary sinus and even the sinus above my eye and it was pushing on the muscle below my right eye (all of this only on the right side). My eye was tearing a lot and looked like it was bulging a bit. The ENT did a biopsy and path came back - lymphoma and was referred to a Oncologist.

Had various tests - Another CT, MRI, PET scan, Bone Marrow Biopsy, ECG, and PORT installed. PET shows no other node involvement. I had my first R-CHOP treatment Oct. 23. Scheduled to have 6 cycles 3 weeks apart.

After this the Oncologist is recommending a lumbar puncture to test spinal fluid and Methotrexate for 4 cycles. He says this is a precaution to make sure none is in my CNS. Is this something that any of you have experienced? I feel like maybe just a standard protocol thing?

I haven't heard anything about radiation.....yet?

The good news is that just the next day after my first RCHOP infusion the pressure and bulging is gone, my right nostril is open, and I can smell Simply amazing!

No side effects yet, haven't lost my hair yet. I am encouraged by the quick reaction to my first Chemo treatment.  

Evarista
Posts: 229
Joined: May 2017

Hello, Dtat, and welcome.  Wow, it sounds as though you have been through a lot already!  Congratulations on doing as well as you have so far.  The lumbar puncture + methrotrexate injection into the spinal column (intrathecal injection) was absolutely part of my protocol.  Done with each of my first 4 cycles of R-EPOCH (= R-CHOP + one more drug).  While it's scary to contemplate, I found that it was relatively easy to tolerate.  WAY easier than the bone marrow biopsy, for sure.  The explanation I got was that B lymphomas have an affinity for the central nervous system, so your doctors want to a) check for any CNS involvement and b) treat to prevent CNS involvement.  

They will take out ~5 - 10 ml of spinal fluid (~1 - 2 teaspoons) for analysis each time and immediately inject the methotrexate.  I found it helpful to take something beforehand, eith Tylenol or prescription Fioricet (combination acetaminophen, barbituate, and caffeine), to prevent headache afterwards.  Wishing you the best of luck with it...Sounds as though you are responding well already.

dtat67's picture
dtat67
Posts: 5
Joined: Oct 2018

Thanks for the detailed explanation of the lumbar treatment that eases my mind. My preconceived ideas since my diagnosis has been all over the board. I freaked out when I was diagnosed with the bladder cancer and got over that after a while and now the lymphoma diagnosis really gutted me. I've gone from "it's not looking too good for me" to "hey, I can beat this!", so it's nice to hear others personal experience. 

po18guy
Posts: 910
Joined: Nov 2011

I had intrathecal methotrexate as part of my transplant preparation. It was done during a spinal tap "just in case" I had lymphoma in my spinal fluid. Yet, I did not have a B-Cell Lymphoma, but rahter two sub-types of T-Cell Lymphoma. In any event, Methotrexate is an older drug whose side effects are well known and which is generally well tolerated. It is given for many autoimmune conditions, so I would guess that there are probably millions of people who have used it.

dtat67's picture
dtat67
Posts: 5
Joined: Oct 2018

That's reassuring, as someone that tends to be leery of the healthcare system (maybe because I am just now getting to the age of having to participate in a major way) I wonder sometimes if some of the tests/treatments are unnecessary, etc. An example is over the last 3 weeks I have had a face/neck CT, image guided CT, full body CT, MRI, PET, face/neck/abdomen/pelvis CT - all were done at the same facility (ARA) which all of my doctors have access to online. It seems they don't look at the previous ones done just a week ago. So when the Oncologist mentioned that I "might" need the intrathecal methotrexate prophetically my first thought was "really?"

Also during my last consultation before starting chemo he said he wasn't sure about radiation treatments. He would need to consult a radiation oncologist. Makes me think that is also in the cards.

Don't misunderstand me - I do trust my Doctor, just skeptical. Since I have seen such rapid improvement already it makes me feel very encouraged. "Knock on Wood", since I have the bulk of the treatment yet to go with any side effects still to come. First being loss of hair - not looking forward to that but as my wife says for men it is probably less traumatic than for women. Still disappointed though because I have only been able to grow my hair long since retirement and always wanted to do so. Cool

I wish there was a spell checker on this forum!

po18guy
Posts: 910
Joined: Nov 2011

But "Don't fear the Chemo..."

I am Mr. bad example, as I have now received 19 anti-cancer drugs over the past 10 years. There is probably not enough bandwidth in this forum to list all of the potential side effects of those drugs. Yet, I am stumbling along in life - which is still worth living, I must say. 

There is much fear of chemotherapy, and it is not unfounded - but it must be balanced against what untreated cancer will do. That is far worse. And, the chemo is carefully dosed, monitored and discontinued if need be. So, be assured that you are in good company and I suspect that you will do just fine.

 

dtat67's picture
dtat67
Posts: 5
Joined: Oct 2018

Good one Wink  I'd say you were a journeyman with a lot of experience. So......any advice for possible mouth/throat issues? I go twice a year to the dentist but my gums have been an issue for years so I am a little concerned.  

So far other than a little sore throat and tongue not many side affects. I am on my 4th day of Prednisone (100mg/daily), went to town immediately afterword and I felt like I was a bit loaded for about hour or so. Really weird. That the only thing I could think of that would have been responsible. It went away. I've been reading about a steroid crash when I stop the Prednisone after tomorrow. Any insight?

 

lindary's picture
lindary
Posts: 626
Joined: Mar 2015

Hi Dtat

I was diagnosed with Folliculat lymphoma. The 100 mg of Prednisone is was got me on this site. The 2 days after the last day was like I hit a very big brick wall. The high is a great time to get things done. The crash hit me like I hadn't slept in weeks.  My timeline for the prednisone was Tues - Sat. What I learned to do was the next day, Sunday, to take a nap in the afternoon. Usually it ended up being about 3 hours.  Monday I also took a nap in the afternoon. It made the overall crash not so bad but I was still tired more than usual for a few days. 

dtat67's picture
dtat67
Posts: 5
Joined: Oct 2018

I got out yesterday and mowed/bagged the grass and it felt great. For one thing it got my mind off of things. Since I have only had the one treatment, not lost my hair yet, very few side effects and have a remarkable improvement with the effects of my tumor I am in a state of relief as of today. As my treatment progresses I can only hope that the side affects are minimul as possible. After all not a lot of choice. I know this proably sounds silly but the one things that I dread the most is my loss of hair. I think it will be a constant reminder that I am sick - very sick. I think I'm pretty adaptable but who knows? I've had hair since the day I was born. My last two years (bladder cancer diagnosis, and now lymphoma) have really brought to the forefront the aging process.

Peace

po18guy
Posts: 910
Joined: Nov 2011

...dentist or dental office (if they do transplants, anyway). Ask doctor about your oral health and do whatever doctor says. Probably a checkup, cleaning and some rinse will help. If your mouth becomes painful, pharmacists make up a solution called "magic mouthwash" from three different ingredients. It deadens your mouth so that you can eat. Be careful not to chew on your tongue thoiugh! As well, there is oral dexamethasone which you can rinse with. Stronger than prednisone (it  is used to shrink brain tumors) it is a strong anti-inflammatory and can help the situation in your mouth.

Steroids are ususally tapered, but not in conjunction with chemo. Yes, you'll feel maybe some sadness or mild depression - that's just how it works. It is not generally as bad as we fear. None of this really is.   

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