Newly diagnoised

hi, I'm diagnosed with diffuse B- Cell follicular lymphoma as of Sept 2010. i am waiting on the results of a pet scan, and bone marrow biopsy. i meet back with my doctor on the 30th. she said she wants to do the R-CHOP chemo on me and treatment it aggressively since I'm 52 yrs old and she thinks I've been sick with NHL for at least one year or more. my diagnoses was missed because my swollen nodes were in my back and abdomen. and one large on on my right neck. i was complaining to doctor but he could never feel them like i could or my husband esp the one in my neck. i feel frustrated at my family doc for missing my cancer but now that i have been reading it is usually watched for awhile I'm not so angry at him and more at peace with the whole situation. I've lost 25lbs so far and was wondering what can i do to slow down my rapid weight loss especially when i have the chemo. and by the way has anyone had a pic line inserted for chemo? as that's my next step. i will keep everyone informed with what my doctor says on Thursday this week. I'm very thankful I've found this support group. any advice about dealing with night sweats and nausea would help and fevers too.

take care everyone.
mbh456

mbh456
PICC lines are fairly standard for chemo because they provide easy access to the veins for pumping in the medications. It is not fool proof however so take special precautions not to contaminate the area around it and pay strict attention to staff when they are opening it and closing it after using the drugs. Another alte4rnative used freqauently is a port which has to be inserted surgically.

The alternative is to have infusion lines put in at every visit. That can be time-consuming and painful because those insertions are usually near the wrist whereas the PICC is in the upper arm.

I can offer little advice on weight loss because everyone has a different reaction to the drugs. There are nausea medications available to help with appetite control. I didn't seem to have a lot of problems with weight during the chemo. What upset my weight the most was an almost constant battle against infections. I had virtually no immunity to anything and eveything and picked up everything that came along. The antibiotics used for that caused complete nausea and the only foods I could tolerate were canned fruits and caramel malts. I could not stand to drink my all-time favorite coffee. Anything else put in front of me had to be avoided if it smelled bad, tasted bad or looked somewhat appetizing. I found it was far easier avoiding eating such food because the alternative was to spend an hour in the bathroom vomiting it up later.

The chemo worked for only a short time for me and the most recent lymph nodes have been zapped by radiation; but even that apparently has not been enough to take care of the cancer so I'll be meeting with my oncology team shortly to look at the next possible options.

You will need the support of your medical team, your family, co-workers and your friends in the long months ahead. I have been blessed on all fronts here.

There are going to be plenty of days ahead when you are going to finish your chemo treatment in a state of near collapse, so allow some time for that to happen and don't put too much stress on yourself. Those days will be followed by some much brighter days...until the next found of chemo.

The treatments do take a fair amount of time each session. Take reading materials, ipods, goodies, and hobbies with you to help fill the hours. Even with good staffing, the sessions take variable times because they rely on blood test results first and then the delivery of drugs in sequence. I had a couple of sessions where I couldn't leave right away because of temperature spikes at the end, so plan for those in your schedule.

I have had a wonderful team of caregivers who have become a sort of second family. They understand a lot more about what you are going through than anyone else on the outside world can.

Lots of luck in youur treatment mode. They tell me this form of cancer has a good treatment success rate. But expect some curve balls along the way too. I am not one of the cured at this point after 17 months. And the oncology community will not pronounce you as cured until after you have hit a five-year remission period. Brace yourself for terms like "incurable," etc., because that means something entirely different in the world of cancer care. Treat this more like a chronic condition and you'll have an easier path through thhe treatment.

hi Vern,
thanks for the information. i think I’ll talk it over with my doctor about the picc line as it doesn’t sound very pleasant to me. I’ll ask for a port instead.a little pain doesn’t bother me.

do you have b symptoms? i do and they are very bothersome to me but I’ve learned to change my clothes when i get soaked at night. i just let myself have a fever.I’m not sure i should do that but my fevers are not very high so they are not bad. it’s just i soak out 4 changes of clothes during the day too. lol.

i have found the staff at my oncologist office to be very nice and friendly. i thought it would be all doom and gloom there but i was wrong.

smells get me now too. which i do not understand in the throwing up department. i find the foods i crave are the ones i can hold down.

well, it was nice meeting you and i love the support found here. take care,
marybeth

Hi MBH, I see you set up your own post, good for you. I look forward to your posts as your journey progresses. From what you said above, I would guess that your doc wants to initiate treatment for a couple of perfectly good reasons. You are Stage 3 (if not 4, the marrow will tell you that) as you have affected nodes on both sides of your diaphragm and you have "B" symptoms such as night sweats, weight loss, etc...that is the time when treatment makes the most sense for FL. I am doing watch and wait as I don't have B symptoms and, while I am Stage 3, I only have one active node whose growth pattern is stable. Just another example of how many subtleties there are when dealing with indolent lymphomas.

Please know that most people with FL are diagnosed at S3 or S4 because of the slow way that it grows which causes it to go undetected in some people for many years. Our cancer type is very responsive to R-CHOP and you should expect that yours will put you into remission, hopefully for many years to come. I wish you the best experience possible with your treatments and good health when completed.

Be well,

kermica

hi kermica,
I’ve just been overwhelmed with all the tests my doctor ordered. namely the pet scan and bone marrow biopsy. why do they make you wait so long for the results. well, actually one week but to me it seems like forever.

how are you doing? my doctor said something similar about me having this for two years already and it had spread so much in that time. I’m not angry at the missed diagnoses but i feel like i can’t trust my GP doctor anymore so I’m thinking of changing doctors. i was going to ask my oncologist to suggest a general doctor so when i get infections and flu and colds i have someone to see. were you getting every virus that came around it seems? i did but i didn’t know why till after talking to people online here.

my oncologist wanted to see if my heart was stable before they do R-CHOP. and it is! i have read it is a good treatment. but my husband told me sometimes it destroys the persons white blood cells. this scares me. sorry, I’m scared out of my wits half the time it seems lately.

well, you take care.

mbh456

I'm doing okay today, thanks. My cold is slowly improving so that is a plus. As far as changing doctors, if your trust relationship is gone then it probably does make sense to ask your oncologist for a recommendation or three. If you go with one of them you would hope that they are tuned into your case and condition.

Regarding the wait, it is one of the worst parts of having indolent lymphoma because you will experience it again many times in the future. A week is exactly what I would expect for results so just try to stay busy and the time will go by. Out of curiosity, is your oncologist associated with a major cancer center? If not, have you considered a second opinion to confirm the diagnosis and treatment plan? Lymphoma is a devilishly difficult cancer to diagnose in the lab and the recommendations I have seen is that you should make sure that whoever is giving you your diagnosis is specialized and qualified in the blood cancers. It looks like that will prove true in my case, as per my post about my journey.

Anyway, once again, sorry to meet under these circumstances but they are beyond our control.

Good health,

kermica

hi, no i do not go to a major cancer center. we do not have one here. i actually believe the diagnosis is right. it was sent to oshu in Oregon for a second look. I’m thinking of a cancer center in Utah if my doctor comes back with a grim diagnosis. i sure hope she doesn’t though as i want to live another 15 years at least. I’m glad your cold is improving. mine went away today. but I’m feverish as always. do the B list symptoms ever go away or get to the point where they are less bothering to a person?

it’s ok we met under these circumstances because i like the friendship and all the support i’ve gotten here.

i’ll be sure to keep my doctor on her toes though.

hang in there and take care.
mbh456

Hi,MBH. I believe that the B symptoms should subside as the chemo does its job. The key above is that you went to the best facility you have in your area for that second opinion. Not getting a second can lead to bad places so I am glad to hear that you had one.

Off to work, have a great day!

kermica

Kermica is spot-on MBH, a second opinion on your pathology results is an absolute must. It does sound like you've gotten one, and while OSHU isn't an NCCN cancer center, their children's cancer center is one of the best in the nation, and OSHU is also rather prestigious in that it's home to Brian Druker, researcher behind Gleevec, the most important cancer drug in decades, and what might one day earn him a Nobel prize.

Regarding your GP, if you weren't really exhibiting any symptoms then it's hard to blame him or her about having missed this dx. As Kermica put it, FL is almost never discovered in the early stages.

Still, if you think your GP slacked off or you have any reason to doubt their competence, fire them.

I also felt the same way about my hospital in general.. Saw several doctors and 2 ER visits before they found it. My Oncologist ask how they could have missed the enlarged Lymphnodes. I cant remember if they ever felt them. I found the night sweats to go away after Chemo. I cant remember how long but they seemed to go away. I gained weight with the predisone during Chemo. I ask my doctor who gains weight during Chemo and he said more than you think. I know during the last of my Chemo treatments i felt much better. I hope you will find the same.
Tammy Brown

Tammy,
thank you. i was complaining about b list symptoms and swollen nodes but he kept telling me nothing is wrong. he never ordered tests or x-rays. the staff thought i was a hypochondriac at the doctors office so i feel the need to switch doctors. i thought he was a excellent doctor but too cocky for his britches sometimes. doctors need to listen to us. we know our bodies more than they do and we know when we feel good or bad inside and when something is wrong.

i hope the night sweats do go away for me. lol. i even sweat during the day rather heavily. not sure why. not menopause.
I’m just trying to lose weight right now because i was 140 lbs overweight just 5 weeks ago and i’ve lost 27 now. feels good. but then again when we have something good for dinner and i’m starving to eat something nutritious my sick to my stomach feeling kicks in and i eat very little so i was wondering if i will get sick and throw up from chemo? i have to go to patient education on chemo yet and have a porta cath inserted. i was wrong before. i had a picc line before and it was a pain.

it was sure nice to meet you. feel free to write me and I’ll write back. I’ll lend moral support. i have limited knowledge about lymphoma but I’m learning some.

right now I’m getting over a cold and my daughter came home from work with a flu like illness so I’m wearing a mask around her and when i go out. feels weird.
well, take care of yourself.

mbh456

Let me know how you make out today. Like Kermica said ask ots of questions, and write them sown before so you can remember them. Once you get in there its all over whelming and i tend to forget. Good Luck
Tammy

sorry for not writing yet as my appointment is today and I’m nervous right now. i was so sick yesterday and i don’t know why. i may have had an anxiety attack but I’m not sure. my nerves are on edge because of my appointment with the doctor today to get the results of my pet scan and marrow biopsy. how does one cope with this and the waiting we experience?
Marybeth
mbh456

Good luck today, MBH. Waiting for results is one of the most nerve jangling parts of this whole experience. There is way too much "what if" thinking time and I know I go all over the map thinking about possible outcomes. I also tend to think the worst which is probably not good. For example, right now I am counting down to a bone marrow biopsy next Friday that will tell me for sure whether I am Stage 3 or Stage 4. I know I have at least two more weeks before I get an answer and that there is not a **** thing I can do about it.

Since I have been in this mode for about a year now (constant tests and waits)I have developed a strategy of using my time to stay busy. I work, sometimes involving travel, I have volunteer activities I stay involved with, I spend time with my family, I read and research lots about lymphoma, etc...

I think this helps me to stay better balanced emotionally and to accept that the results are going to be what they are, no matter how frantic I may get in advance of the results.

Good luck today and let us know when you can.

Good health,

kermica

MBH, I hope your appt went well & you rec'd solid answers. This is new territory, obviously, & it's only logical we'll have a bunch of "what ifs" piling up. The idea of taking a pad & pen w/you to appts is good. My oncologist has e-mail access & I send him a message whenever I have any reactions or idiosyncrasies. I don't expect them all to be big deals but this way, they're on record. And he always responds, via e-mail or call. He's advised me to make sure to let him know of whatever happens after & between treatments. He'd rather me over-contact than not let him know what's going on when I'm away from treatment.

I've been diagnosed for years w/lupus & it appears now many of those "lupus" symptoms were lymphoma-related. I could be angry w/my regular dr when I'd go in w/symptoms & he'd give me the expected answers. Yet I understand lymphoma isn't easily diagnosed & simply not expected. I got blood tests all the time ... but I also understand lymphoma doesn't show in most blood tests. Bottom line--if you're uncomfy w/your dr, maybe you should change. I still trust mine, despite it all.

And attitude, combined w/the best medical care, is everything. Life continues ... good days & not-so-good days. What this has proven to me--there are SO many good people in our world. ; >

Blessings on your journey ~ Linda

MBH, how are you making out? I haven't seen an update for a while and know you started your chemo, I hope all is going as well as can be expected.

When you feel up to it, let us know how you are doing. We are here and we care.

Good health,

kermica

hi, i'm doing ok. i had some problems but i seem to be ok now. i'm in the midst of losing my hair. it seems to be falling out all over now. it upsets me a lot to lose it. i think all in all i'm ok with everything. my doctor wants me to take ativan for stress more now. he also switched me to a more powerful pain killer now. i kept forgetting to put a patch on before so now i just take a pill every 6 hours when i need it. some of my b-list symptoms have returned but he said it was normal as my next chemo is in 1 1/2 weeks. i will try to post more often. sometimes i get depressed and feel like whats the use but i keep plugging along.
mbh456

Hi mbh456, just read through your journey here. Wow you have been through a lot, but it sounds like you are making some progress. Because it is such a long road it is easy to understand feeling down. This is a roller coaster ride none of us would ever get on. Is there anything you can do to change your mood when you start feeling really down? Sometimes just getting outside helps me. I am not in treatment yet and next 3 mo scans for me is on Tues. I couldn't sleep last night, up till 3 am. so just read a lot. It did make me feel good to read some of the success stories on this site. If I have to have treatment I think I will read them over and over again. I say whatever lifts your spirit, do it! (unless it's illegal, oh hell do that too, I have Willie's phone number...LOL) Hope you feel better and remember, we all care what happens to you. God Bless!

Hi KBeale, i'm glad you wrote to me. yes usually i do stuff i enjoy to keep the blues away. my doctor prescribed ativan for me to take on treatment days to help calm me down and also for days i feel stressed out. i only use it sparingly for i know it can be addictive. music really calms me and games on facebook. i've really slowed down lately so i think that was what had me feeling the blues. food i used to like i can't eat anymore and it boggles the mind how your taste buds change in treatment. i hope you do really well and do not need chemo for a long while. i hate chemo but it does make the B-list symptoms go away for awhile. well take care and write me and let me know how you are doing.
mbh456

What games on Facebook do you play? I play Farmville and Frontierville. I have met some wonderful people through those games, some that are also dealing with health issues. If you play either of those games we need to be neighbors. You can look me up, Kathy Beale to send an invite. I also use the games as a distraction esp while we have some TV show on that's boring. Best of luck with your next treatment and I'll keep checking on you.
Kathy