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Diagnosed with B cell non-hodgkins lymphoma

dtat67's picture
dtat67
Posts: 9
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: 251
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: 9
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: 962
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: 9
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: 962
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: 9
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: 634
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: 9
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: 962
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.   

AaronW's picture
AaronW
Posts: 47
Joined: Aug 2010

Hi dtaa67,,,how are you now?

 

dtat67's picture
dtat67
Posts: 9
Joined: Oct 2018

Hey man, I'm doing pretty good. I had my second treatment. This one was a bit worse for me than the first. I've been tracking my meds and feelings daily to be able to just compare. On my first treatment I noticed that the first 5 days were pretty uneventful other than a feeling of just not feeling well. Slight nausea one day but not much, the Prednisone makes me feel kind of weird,etc. but after stopping the Prednisone the next 2-3 days I didn't feel well at all. I was taking Acetaminophen every 4 hours for a bad headache and pain behind my eye but that worked pretty well. After my 2nd it was pretty much the same except today is day 9 and I'm doing quite well. Also something weird....I keep smelling kind of sickly chemical smell all the time..."Ooooh that smell, Can't you smell that smell, Ooooh that smell"... but that seems to be gone today. Also problems sleeping for any long period of time, constantly having to urinate during the night (2-3 times) and my vision is not as good as before treatment

So yeah, doing very well today and hoping I get a nice break before the next treatment. I'm hoping that I can get a little more motivated. I've been using our unusually cool weather to just be a couch potato, sleeping a lot, etc. but I need to get some exercise for my mental and physical well-being.

I cut my ponytail and have lost most of my hair but not all. It's kind of strange I still have a bit but only the  white hair seems to have stayed on my head and beard. I guess that will go after my next treatment. I just look like an old man!!

Thanks for asking - How are you doing?

Evarista
Posts: 251
Joined: May 2017

Yup, it's real.  I was told that it was the Cytoxan (cyclophosphamide).  With EPOCH, that's the last infusion before going home from the hosptial. I smelled it everywhere and insisted on changing bedding every 2 to 3 days because I could not stand it!  Dog didn't like it either, by the way.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3123
Joined: May 2012

Evarista, dtat, and all,

Several months after I ended infusions I was talking with my two kids. We discussed the improvements since chemo had ended, and my daughter, who was then 15, contributed the following:  "Yea, all of that is great, and you don't stink like chemicals any more."  I often had a strange thought during trreamtnet also.  I felt like my blood had been drained out and replaced with lighter fluid.  I believe thus relates to a self-awareness of the chemical odor that I was not directly conscious of.

Lindary did a post regarding the baldness. Like some people, I lost ALL hair, including eyelashes. Even my nose hairs disappeared (odd, what a patient will notice).  I have always had a habit of sleeping with my head somewhat pressing against the headboard.  Today there is a foot-wide circle where my head touches, and ALL of the finish on the wood dissappeared (it is a hardwood bed, but I'm not certain if it is varnish or some other form of wood staining).  I had never thought about it much, but my wife mentioned last year that the change in the wood she attributed mostly to chemicals in my skin during treatment.  Very possible, I'm sure.  

max

lindary's picture
lindary
Posts: 634
Joined: Mar 2015

When my one brother-in-law had cancer and lost his hair he wore a baseball hat that had a ponytail in the back. I never saw him without it. 

For me I decided to wear caps. To me the wigs were too much work, more than I did for my real hair. Plus I started chemo in January and the caps kept my head warm. 

dtat67's picture
dtat67
Posts: 9
Joined: Oct 2018

Funny, my wife said last week if I had a ponytail on my baseball cap no one would ever know I was bald. I goggled it and sure enough you can get one! I'm not sure I have the guts to wear one.... kind of like a "Davy Crockett" hat. Money MouthSince most of my hair is gone I am actually enjoying the fact that is is so carefree!! Also like the face that my beard is almost non-existant - only shave the tiny stubble every 4-5 days. 

BTW - I changed my profile pic to when I was in my 30's and had a full beard.....just for fun!

po18guy
Posts: 962
Joined: Nov 2011

Back when I was receiving Romidepsin (a biological drug), I knew that it was not only active inth e skin, but was exuded to a degree through the pores in the skin. DW said she could smell it. So could the mosquitoes. I watched them land, spend a second or two and then make a hasty exit! Even insects knew that it was poisonous! World's most expensive mosquito repellant?

Even more dramatic was in the early days of my port, when I did not want to be scanned at the airport, so I asked for a pat-down. Well, part of that involves swabbing the skin with a litmus paper which reacts to biological agents like Ricin, anthrax, etc.

Well, it lit up like a Christimas tree and supervisros were called. I was escorted into the privacy booth and got pretty much the full meal deal. You see, Romidepsin is a "biological agent" and I told them that, but national security or something, prevented them from acknowledging it.

yesyes2
Posts: 587
Joined: Jul 2009

Twenty-five years ago when I was receiving chemo for my breast cancer our city was having a huge problem with mosquitos.  Until recently our area did not spray for them.  I could stand in my kitchen window and watch them swarm.  However, if I was outside they would swarm around me, come in for a landing and then quickly back away.  I was receiving CMF, methotraxate, cytoxin and 5 FU.  Because during chem my thyroid stopped functioning I held the chemicals much longer in my body then I should have.  I was told that even touching me was toxic to a degree and to stay away from infants.  Must have been oozing out of me.  When I was receiving RCHOP I didn't feel as toxic.

 

Billbikes's picture
Billbikes
Posts: 6
Joined: Nov 2018

I’ve had many. The thought of a needle there is daunting, but it’s not too bad. They never found any cancer cells in the fluid, and I went to a different type of chemo so the treatments stopped. 

Hair... I always shaved my head before I got sick so that part wasn’t too bad. Losing my goatee, was another matter. Not to mention there’s hair all over our bodies. Wasn’t bad, I just felt weird. Some people have their hair grow back differently, my facial hair has a lot less gray, which is a good thing. 

dtat67's picture
dtat67
Posts: 9
Joined: Oct 2018

As I said in an earlier post, my Doc mentioned getting them, I questioned him if it was really necessary, etc. I was expecting to have one on my first treatment but in my meeting prior to chemo he said he would wait until the Chemo was over and he hasnt mentioned it and I haven't brought it up again. I have mixed emotions. I am ready to be done with all the chemicals, I know they all have side effects but on the other hand I want to be CURED. So I will do whatever I am told. 

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