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Large B-cell lymphoma

rocky5
Posts: 16
Joined: May 2003

HI! My dad is 63 years old today, and last week was diagnosed with NHL Large b-cell lymphoma in stage 3-4. He is currently on CHOP and Rituxin. i was just wondering if there was anyone his age that has survived this specific type of lymphoma.....and any advice on how we can get it into remission fast? :) thanks, I'm just looking for that little light in this dark road ahead.

railroad
Posts: 22
Joined: Apr 2003

My mom is going through chemo(fludarabine and mitoxantrone)for follicular b-cell,mixed small and large.She's doing pretty well so far and she's 75 years old.She has had it for about a year now.She's responding well but her type does not often allow for a "remission" as such,only treatment every so often.It's slow growing(indolent)and people with her type have about a 10 year window.It's not an exact match for your dad's case but I hope I've helped.CHOP and Rituxan seem to be common treatments so he's probably getting the help of a good onc.One bit of advice:don't take this lying down.Learn all you can about it and you'll be able to be a great help to your dad.My philosophy with my mom is that she is one of many patients to her doctor,but she's MY only patient and I can give her the extra bit of help when needed.Nutrition is important as well.
Best of luck to him and you.
Randy

rocky5
Posts: 16
Joined: May 2003

Randy, Thank you so much for your message. I was wondering if you could off some advice as to what some good nutritional things I should be providing to my dad. I have found great support on this network. And I just want to thank you immensely for replying. I hope your mom is feeling better. There is a light at the end of the tunnel!

railroad
Posts: 22
Joined: Apr 2003

Thank you.Mom is better and tumors are shrinking slowly but surely.I would stay away from "quack" things you may hear about and stick to time-honored foods such as vegetables and fruits.Include all the color groups such as greens,reds and yellows.I have my mom eat green beans,spinach,tomatoes,corn,etc.She also drinks V8 juice which is basically liquid veggies.It's ok to grab a burger or a taco occasionally,too, but to incorporate lots of fruits and vegetables in an everyday diet helps.Remember that it's best right now to maintain or even gain weight than deal with weight loss.Teas(green or black) are good to drink and about any fruit such as oranges,peaches,pineapples are good as well.There are no miracle cure foods,just ordinary foods to help nourish.Best of luck and i hope your dad does well.
Randy

cbpgill26
Posts: 68
Joined: Mar 2012

I am in the gloom doom stage. First visit with onocologist in one day away. I am sooooooooo dreading this. I like your mom have a great support system my husband and my son. I too think to ward away from specialty drinks I have read about and stick ith veggies and that V8 juice. I have been griving and starving myslef. I have lost 15 pds. in three weeks just existing. I am 68 but thought I was fairly healthy till a lump on my left eye in the corner came up. Slammed with this Large B Cell diagnosis. I wish you and your mom good luck and send prays to all of us in this situation. Thanks Randy

cbpgill26
Posts: 68
Joined: Mar 2012

read your post date wrong.

pamr
Posts: 5
Joined: May 2003

I know a 49 yr old male with large B cell NHLwho has gone through CHOP, Rituxan, and now is being evaluated for a BMT (bone marrow transplant) Depending on which center they may consider a stem cell. Hang in there! I'll add your father, and your family to my prayer list.

rocky5
Posts: 16
Joined: May 2003

I am a helper to my dad, taking him for treatments, cooking his meals, cleaning his room, etc. but it seems that I've gotten a cold. I don't want my dad to get it for reasons we all know. Can anyone offer any suggestions on how I can protect myself and him as well in case I do come in contact with him. I don't want him getting sick and delaying his chemo treatments. Has anyone else been in this situation? Please reply with suggestions and advice, it's greatly appreciated.

cbpgill26
Posts: 68
Joined: Mar 2012

I'd like to help but soooooo in the dark on all of this. Survival is so iffy as sooooooo many things to look at in each case not the same. I see 5yrs but what quality of life I don't know. I have Large B. Cell lymphoma just diagnosed this week. Onocology appt. on Friday. I wish you luck. I asked a nurse about survival and she said she believed in prayer. I do too but I am looking for a yes or no. Sorry. lol and best wishes.

nikkig43
Posts: 73
Joined: Feb 2012

My husband was diagnosed with Diffuse Large B Cell Lymphoma in January. It is located in his L tonsil and a few surrounding lymph nodes. I was in the room when he had the bone marrow biopsy. He said it wasn't too bad, not pain really. More like a feeling of intense pressure. He has had 3 rounds of R-CHOP chemo with almost instant results. This type of cancer is very responsive to chemo. Thank God. He has been able to continue to work throughout treatment. That was very important to him. His repeat PET scan yesterday showed no more cancer!!! He will continue treatment with 3 weeks of radiation coming up to help prevent recurrence. There is light at the end of the tunnel.
You can do this. It's curable. Hang in there. Good luck tomorrow.

cbpgill26
Posts: 68
Joined: Mar 2012

I am 68 I pray we can survive. Your dad is younger though an probably better odds.

cbpgill26
Posts: 68
Joined: Mar 2012

Sorry read the date wrong! I pray all is well.

DennisR
Posts: 148
Joined: Sep 2009

I was diagnosed with NHL large B cell lymphoma about 10 years ago. I had re-section surgery followed by R-CHOP chemo and went into remission for 8 years. The cancer re-curred after 8 years and I was again treated with a different Chemo regimen followed by a Bone Marrow Transplant with full body radiation. I was about 58 at the time of the first go round and 66 when I had the BMT. So far I'm NSD and feel great. Don't ever give up fighting this demonic disease. Good luck.

cbpgill26
Posts: 68
Joined: Mar 2012

Your post helped me tonight. I am so glad you had 8 yrs cancer free. What a blessing. I am gaining courage through all of you. Terrified of a bone marrow test? At this time I'd rather run into a train. See the onocologist tomorrow for what I am sure is a long list of tests. I will try to be brave as you. Buttttttttt I am having spells of depressin Dennis. Thanks for your comments.

rileysmith1's picture
rileysmith1
Posts: 4
Joined: Apr 2012

I am a survivor of (16yrs on May4th-anniversary of my bone marrow/stem cell transplant)I was a 29 year old wife and mother of 3 young children when I was diagnosed.I was unbelievably healthy until this.once diagnosed, I was the poster child of everything that could go wrong did. My fight was all uphill.It was the worst 1.5 yrs of my life.My diagnosis was less than 20% survival rate because my Stage IV large cell diffused non-hodgkins lymphoma was so aggressive.After 6 months of CHOP/ICE I was in remission for less than 2 months and when it came back so quickly it was extremely aggressive.I then endured 3 rounds of HIGH treatments to try and get me in remission but they couldnt.Seeing the tumors were shrinking they did the bone marrow/stem cell transplant anyway and followed immediately with 28 rounds of radiation.
Why do I share this story--because that was 16 years ago.Today I am 46 years old living my life to the fullest. CANCER FREE!! I have a cough that wont go away but besides that I am very healthy.You may go through some difficult times but keep the hope alive.At the time I wanted so badly for my Dr to tell me everything was going to be fine but she couldnt.I had to figure that part out and every hoop she put out for me I had to have the courage to jump through even when it was on fire.Reach deep down and fight this battle how ever you need to.My prayers are with you....I want to be a ray of hope and light to all going through this...Ellen

cbpgill26
Posts: 68
Joined: Mar 2012

Your post helped me tonight. I am so glad you had 8 yrs cancer free. What a blessing. I am gaining courage through all of you. Terrified of a bone marrow test? At this time I'd rather run into a train. See the onocologist tomorrow for what I am sure is a long list of tests. I will try to be brave as you. Buttttttttt I am having spells of depressin Dennis. Thanks for your comments.

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Hi all, this is my first post still cannot believe I'm in this situation I had a parotid tumor removed April 17th and biospy showed Large B Cell Lymphoma, well long story short started Chemo R-Chop on June 8th and ended up severe constipation on the 13th ,been to ER twice they are telling me I have a sluggish bowel, been going on 5 days now and can't take the cramps much more.... I did magnesium citrate, Gatorade,Miralax,prune juice,stool softener with very little results any info on relief of stomach cramps would be greatly appreciated thanks and prayers to all going Thur this

yesyes2
Posts: 530
Joined: Jul 2009

Rexmax, you need to speak with your Oncologist .  One of the drugs, Vincristin, in the RCHOP is known to cause sever constipation.  The reason the bowel is slow is because this drug causes slowing of the muscle contractions in the bowel.  I am not a doctor but was told not going to the bathroom for 3 days is a serious concern.  If taking double dose Miralax daily isn't doing the trick you need prescription doseages in my opinion.  This will happen every time you get RCHOP so be prepared before hand.  When I was getting RCHOP I was on Miralax from the day before chemo until one week after chemo.  What helped me was a had a throat problem, thrush, caused by the chemo and the medications side effect caused the reverse problem.

Many here have had similar problems with chemo induced constipation.  I'm sure more will chime in.  

Wishing you luck in getting this resolved.  Please keep us informed.

Leslie

Evarista
Posts: 87
Joined: May 2017

I feel your pain, Rexmax.  As YY2 says, you need to get the current issues dealt with before it becomes a major medical emergency.  Have you added walking to your current regimen? Very important to get up and moving around as much as you can.

Going forward, being proactive can definitely help, again as YY2 suggests.  Having been through an episode like yours after my 2nd round (R-EPOCH; vincristine also the culprit), I got very aggressive about staying on top of it:  1) Started Colace 1 to 2 days prior to admission; 2) Brought my own fiber cereal to the hospital for dailly breakfast; 3) 2 Tblsp daily of mix recommended by our Geriatrics clinic: 1/3 fiber cereal, 1/3 prune juice, 1/3 applesauce (make in blender fresh weekly & keep refrigerated); 4) Drink lots of water; 5) Walk as much as possible. With this program, my subsequent rounds were uneventful...Meaning things were regularly "eventful". Good luck with it & feel better soon

PBL
Posts: 107
Joined: Jul 2016

Hello Rexmax,

Sorry you're going through this. You did, however, come to the right place for info and support.

My very first R-CHOP infusion brought my bowels to a grinding halt. Nothing moving for five days, no matter what I tried. I called the hospital (twice!), talked to the hematology resident, took whatever meds he prescribed - to no avail. After five days, things slowly started moving again.

When I saw the hematologist for my second infusion, I made it quite clear that I wanted NEVER to go through that again. As I had a bunch of other neurological issues that had all arisen from that first infusion, he gave me a thorough neurological examination and decided to pull the vincristine from my regimen.

My chemotherapy has now been over for a full year, and I can say that I haven't fully recovered from that single encounter with vincristine.

Make sure your Doctor is aware of what is going on. Do not spare details, as this can be serious. Some amount of discomfort, I suppose, is unavoidable - but misery is not acceptable.

Hope you feel better soon.

PBL

 

Evarista
Posts: 87
Joined: May 2017

Re. the Colace I mention above: took it twice a day starting 1 - 2 days before chemo, throughout the chemo, and continuing for 2 - 3 days afterwards (all with Dr.'s permission, of course). And in case no one has mentioned it: you should be avoiding other meds that slow motility, such is NSAIDS (ibuprofen, advil, motrin, etc.), opiates. 

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Thanks for all your replies, My Onc ordered Lactulose Solution to help with the constipation, has anyone else used this and did it work? I took first dose 15 mil last night so far have been able to pass gas at least that's a start. I wish I had known about the constipation issues before hand as Dr never mentioned it, I am so great full I found this site there is so much great info on here and all of you posters are awesome!!! 

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lindary
Posts: 578
Joined: Mar 2015

One of my favorite subjects. Right there with prednisone.

I've had IBS for over 20 years so bowel issues, I've had more than a few.

So when I did my first round of R-Chop I made sure I had the laxitive my Onc recommended and took that night of the treatment. It took 4 or 5 days before I had a bowel movement. After reading a few blogs I decided to start taking the laxitive the night before the chemo. I also set a goal to drink 2 liters of water the day of chemo and every day for at least a week after the chemo. It still took at least 3 days for the bowels to kick in again. Apple juice also helps some.

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Saw my onc yesterday, we both agreed having muga scan, bone Biopsy,ultrasound,Pet Scan, port put in, surgery,and chemo etc. all done in about a 2 week time frame really caused the severe constipation issues. Started 2nd cycle (6) of chemo yesterday with no changes to med to see how it goes this time onc said if constipation exsits after 3 days call him asap. Onc said I'm stage 4 because of where located which is in both neck glands only, nothing below neck area. I really thought I would be stage 2 however not to worried about that. What I really want to know has anyone had to different Lymphomas at same time. Onc said I'm 90% Large B-Cell and 10% Folicular, is it rare to have both? I really appreciate any info you all might have, I have read a lot of super good info here. I am so thankful for this site. prayers and hugs to all.

Sandy Ray's picture
Sandy Ray
Posts: 95
Joined: May 2017

Well I would say Prednisone and Constipation  have been my worst enemies on RCHOP. My ONC gave me a list of over the counter medicine to take for Constipation but if you start late it is very hard to catch up.

I got behind on treatment 2 and let me say that will not happen again.

My regime now is 2 Senekot and 3 Colace started the evening of treatment and I take it for about 5 days. Most of the time this has kept things moving. Occasionally I have violated Dr recommendations and given myself a fleet enema. They really frown on this because of risk of tearing something and causing an infection. I am careful but I have had more bleeding from straining. The pain from constipation and the after effects are terrible when you are already worn out from the chemo and it's side effects. Remember I am not a Doctor and this is not medical advice.

Just wanting you to know what has worked for me.

Yes I have 2 types of Lymphoma I was diagnosed with a rare form of Hodgkins indolent Lymphoma and a rare type of Non Hodgkins agressive Lymphoma. Though both of mine are very rare from what I have read in the people that have these types it is not unheard of for people to have both. I am not as familiar with the types you have.

Hope I helped some.

Sandy Ray

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Thanks for the reply I also did the fleet thing, and doing senekot and colace and really trying hard to do at least 64 oz of water daily, it's just that nothing taste good even water which was always my favorite drink! Hopefully someone will have some suggestions on how to get more liquid tips. Wishing all the best to all

Sandy Ray's picture
Sandy Ray
Posts: 95
Joined: May 2017

My wife buys packets of flavoring they sale to  make the water a different flavor.

Fruit punch, lemonade, mango, etc...... just flavor packets or squeeze bottle you squeeze a little in.

This helps me. I drink bottled water 16.9 fl ounces I try to drink 4 bottles a day. Some days I make 3 some days 5.

I also eat bacon and eggs some mornings for breakfast and scramble the eggs in bacon grease. That seems to get me going in the morning.

I started strong doing all the right things but slowly losing appetite and harder to eat as well.

Hang in there lots of people on here have been there and are doing great now.

Sandy Ray.

Evarista
Posts: 87
Joined: May 2017

I tried to combine assisting my profound loss of apetite (along with my plummeting protein levels) with keeping up my fluid uptake.  So:  liquid Ensure-Hi Protein when nothing else would go down.  Also, mixing a Carnation Instant Breakfast (sugar-free) in a glass of milk with meals.  Stuff like that can help on multiple fronts.  Be sure to keep up normal oral fluid intake while getting your chemo.  Early on, I made the error of assuming that I was more than adequately hydrated from the i.v. fluids (actually my fluid overload required diuretics). Wrong. That fluid was not going to my bowels and my failure to drink only contributed to the constipation.

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Thanks for the fluid ideas found the sugar free orange crush to be a favorite for me, also doing really good with the ensure , also throwing in a few meal replacements shakes, as I just don't have a good taste of anything!!!! I did notice about 2-3 days before next round of chemo did get some taste back so hopefully will return again this time. Happy 4th of July to all and be safe!

Evarista
Posts: 87
Joined: May 2017

Not obvious from what you find at the grocery store, Walmart, etc. but there are several varieties of Ensure other than the ubiquitous Original (the clear liquid).  Two that I used were Ensure Enlive (choc, van, strawberry; 20 gms protein) and Ensure Hi-Protein (like Enlive with 16 gms of protein but lower carbohydrate; this helps keep the blood sugar under control while you are taking prednisone).  You can order these from Walmart & Amazon (I think). Buy enough & delivery is free.

lindary's picture
lindary
Posts: 578
Joined: Mar 2015

During my treatment my eating habits were terrible and my husband was an ogre about it. I got him to back off by agreeing to a nutritional drink every day for lunch. We bought the Walgreens chocolate drink by the case. He looked for it when it was on sale. For a while I was also drinking a protein shake but had to stop when it was causing some probems. 

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

constipation issues continue after 2nd cycle of R-Chop,even though I'm drinking 64oz flavored water, miralax twice a day,colace,senokot. Also doing protein shakes, my TASTEBUDS make everything taste horrible!!! The only thing I can seem to tolerate is dry white toast which I'm sure isn't good for me. Also noticed I am starting to feel really tired, trying to do 30 min on treadmill is getting difficult. Do tastebuds ever come back??? I'm open to any suggestions you all might have thanks have a great day!                                

                  Rexmax 

Evarista
Posts: 87
Joined: May 2017

Sorry to hear that your GI troubles are persisting; hopefully they will correct soon.  As far as taste/palette, I'm guessing everyone is different, but I also found that nothing tasted good and I had no appetite.  I only wanted pasta for several months, plus the white bread, of course!  But my husband insisited that I keep up my nutrition, so here's what we worked out:  Breakfast: FiberOne cereal was the most palatable for me, so daily with milk.  Lunch: toast +/- yoghurt or cottage cheese +/- Ensure.  Dinner: the frozen food aisle became my "go to", especially the pasta meals.  Lean Cuisines are generally bland but high in protein, so my hub's instructions were to get "something with pasta, non-spicy, and protein at least 15 gm protein".  Other: plain cream cheese on the toast, fresh avocado (washed well!) bland & helps with low potassium; Kraft American cheese (protein, sodium), potato chips (but omit salty things if you begin to develop mucositis), peaches, etc. in light syrup. You have to work out what you can tolerate and don't be surprised if your preferences change.  My tastebuds did come back...

That you are keeping up your exercise is great, but really tired is part of the package. You may find that it lasts a while.  It's not surprising that you cannot do what you are used to doing, but if you can't do 30, do 20 or 10, or just go slower. Hang in there.

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Thank you so much for offering your suggestions on meals etc. I will be trying the frozen isle I'm sure there has to be something I can do. Also going to stop the high protein shakes and stick more with Ensure and meal replacements. 

PBL
Posts: 107
Joined: Jul 2016

Sorry - but not surprised - that your digestive issues have not yet subsided. As I have already indicated, I am a full year out of R-CHOP and have not returned to my former bowel habit. The good news is, my tastebuds did start to recover within a few weeks after my last infusion. Until yours do, I suggest indulging in whatever is palatable to you (which, as Evarista has pointed out, will probably vary over the course of your treatment) while addressing the "sluggish bowel" issue.

A few suggestions here:

- Your hematology/oncology unit might have a dietician you could talk to and get proper advice from.

- You may want to increase your fluid intake. I drink twice as much as your 64oz on a daily average, with 25% of my intake being a magnesium-rich mineral water called Hepar. There are several other brands on the U.S. market, including two Californian and several French and German waters according to this study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1495189/pdf/jgi_04189.pdf).

- Protein shakes (generally consisting of milk powder) are probably not necessary and may increase your discomfort by causing constipation and giving you gas on top of that. You might be better off with a home-cooked-vegetable-based diet (btw - just a reminder - potatoes are NOT veggies for this purpose). Zucchini or eggplant can be about as bland (if that's all your tastebuds will allow) as white bread, and way more beneficial. However, if you try spicy (which does not necessarily mean "hot") dishes, you could end up finding them more appetizing - with the added benefit that many spices are stimulating for your bowels.

- Steering clear of known constipation-causing food items such as chocolate or rice, and substituting whole-grain bread for your white bread may also help.

- For almost a year, starting on the day after my first infusion, I would give myself an abdominal massage. It is a clockwise circular massage that begins in your lower-right quadrant and basically  follows the colon up the right side of your belly, across (right under the rib cage) and down the left side, applying firm pressure all along and breathing abdominally at the same time. I would begin the day with that even before getting out of bed. It is not miraculous, but provides much-needed comfort.

Hope this helps you with this issue.

PBL

 

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Thanks for the info after ready your post I decided to try some vegetable soup I had and actually tasted better than I thought it would. I will trying some different things this week till I find something that works. 

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Forgot to mention I also have very dry skin especially my hands, starting to notice little nicks on thumb and fingers just from opening water bottles etc. Is this related to R-CHOP?  Or possibly too much hand washing? I have been putting olive oil on however my dogs keep trying to lick it off lol anyone have a favorite lotion or Solutions that would deter the dogs thanks

PBL
Posts: 107
Joined: Jul 2016

Yes, I would definitely say that this dry skin problem is caused by R-CHOP - in my experience at least. As soon as chemo was started, my skin became extremely (painfully even) dry all over, but especially in my hands. The skin inside my palms would crack open, and fingertips were even worse.

I quickly started using shower oil after every shower. It was very fragrant, which I found difficult to bear as I not only had taste issues, but also intolerance to all sorts of smells. Maybe you can find an unscented brand - I didn't... I did however stick to that shower oil because it did the trick. I tried another brand which made things worse - I believe this was because that other brand was mineral oil-based, so I would advise you to make sure the oil you choose is 100% vegetable oil. After rinsing off the soap I just used a small amount from neck to toes and rinsed some more before stepping out of the shower.

For my hands, I alternately used eczema cream and diaper-rash cream. When things were really bad I would lather it on thick at bedtime and wear cotton gloves over that for the whole night.

Needless to say, dishwashing gloves are a must, not just for dishwashing but for household chores at large!

There again, things took several months to revert to "normal" after chemo was over. I still have drier skin than before, and do not hesitate to use oil and cream when necessary.

As to the dogs, I do not know of any other deterrent than a firm "No!" ;-)

Hope this helps.

PBL

lindary's picture
lindary
Posts: 578
Joined: Mar 2015

Another great food item is V8. I could not eat much when it came to veggies so the V8 kind of filled that gap. 

As to constipation - water is the big thing. I have nurses tell me that I didn't need to have a large water bottle with my during chemo because of the saline solution I was getting. Then I would have other nurses say that it was important to have lots of water before, during and after. I decided to keep up with drinking a lot of water every day. Even now where I am 18 months after treatment I still drink a lot of water. It is great to soften stool.

Evarista
Posts: 87
Joined: May 2017

Yes, dry skin seems to be part of the "package" for me too.  I even have places where my skin is blistering/peeling like a sunburn.  And fingernails?  Hopeless.  I'm using strong hand-cream (Eucerin, Nivea, Aquaphor) and figure that this too will eventually pass (actually, it's so far down my list of issue, I barely pay attention!).  A & D Ointment rubbed into the nail beds is very helpful for me also. But the last thing I would do is anything that caused my dogs to lick me! That only means more hand-washing, right?  You do know that petting, licking by your pets is to be avoided?

On the "dry white toast" front:  I know this is not the most nutritionally sound recommendation, but for now:  once I got past the dry toast phase, I discovered Eggo Waffles...They have a Nutri-Grain version that have ~13 gm fiber/waffle.  Every little bit helps...Hurray for the frozen food section!

Rexmax's picture
Rexmax
Posts: 33
Joined: Apr 2017

Thanks for info I started using baby oil which seems to be helping at the moment. The only thing my onc said about dogs was to wash hands after touching and said no cats. What's weird is I had a Hugh craving for pancakes so I made one and it was pretty good and I never liked pancakes before. I did pick out some items from the freezer  section today all with a min of 15 grams of protein. I'm really glad I found this site as you can see I have a lot of questions and can only see onc the day of chemo every 21-28 days so thanks again   Lillian 

Steve2590's picture
Steve2590
Posts: 6
Joined: Jul 2017

I just got diagnosed with diffuse large B cell non-Hodgkin's Lymphoma. Started on my skin...arm and leg. I have a bone marrow draw and PET scan this week. Anyone here been through this...words of advice/encouragement?

Cocamoxb
Posts: 6
Joined: Nov 2016

Steve,

 

youll find many many folks here that have a wealth of info.

 

just a couple things I'd suggest.

 

I had double hit (MYC & BLC2) Non-Hodgkin lymphoma DLBCL. I'd highly recommend making sure they perform a FISH test.

 

Up to and during treatment, do your best to stay hydrated and active. Some days you won't feel like doing much. That's perfectly fine.

 

Lymphoma is very treatable. Don't be afraid to get a second opinion. Find the best specialist in your area.

 

Kick it's butt!!

 

Very sorry you had to find this message board, but glad you're here! All the best to you and your family!,,,

 

Harry

Steve2590's picture
Steve2590
Posts: 6
Joined: Jul 2017

Thanks very much Harry. It is great to hear your words of encouragemen. What is the FISH test? I am being seen by a National Cancer Center at the University of Kansas Medical Center in Kansas City.

Sandy Ray's picture
Sandy Ray
Posts: 95
Joined: May 2017

Most everyone on this site has heard the diagnosis of Lymphoma for them or a family member. There are lots of success stories. Lymphoma is usually very treatable . I hesitate to say it is the best kind of cancer to have because my choice is none at all. I found research helped me know what I was really facing. Some prefer to just let the Doctor tell them what to do. I met with 3 Oncologist before I started treatment. This was in part to the fact my type was extremely rare and I had 2 types at the same time. I ended up using the local oncologists even though his practice is smaller. Ultimately the Chemo was the same no matter who I used. I asked my Oncologist to recommend his top picks for Hospitals in the US for the type of Lymphoma I was diagnosed with. He gave me 2 choices and I researched them and chose one. He was fully behind my getting as many opinions as it took make me feel comfortable. He still confers with that research hospital on my treatment. Cost me about $1,500.00 to fly out to the hospital and meet with the Oncologist but I came back comfortable in the course of treatment.

Definite diagnosis of specific type of Lymphoma is one of the most critical steps in the process. My biopsy went to 3  different labs. Ended up at National Institute of Health because of how rare it was. Once that is nailed down it is usually a matter of matching the Chemo to the Lymphoma.

Put yourself at ease Chemo is not quite like the stories we have all heard of years gone by. Many of the side effects are managed (especially nausea). There are some side effects and when you are fighting cancer some things that normally would be an inconvenience really can frustrate you. This website is a wealth of knowledge to help minimize those side effects with things that have worked for them. Just come here and ask.

Just continue to keep everyone in the loop and we will be here to help all we can. 

I went to Doctor 2/2017 and just finished Chemo 7/2017 so 5 months. Right now it shows I am in complete remission. I still am recovering from the effects of the Chemo. I cannot tell you how lomg that will take because I have not made it that far yet. I can tell you it has not been fun but looks like there may be a lot of good years still ahead. 

Go and do what you can as much as you feel like it. During Chemo there will be days you do not feel like it. Chemo is cumulative so the first few treatments are usually the easiest. Remember everyone is different. I got the flu with my first treatment so for me the first was not so easy. 

You can do this! Do not hesitate to ask any questions at anytime! We are here to help!

Sandy Ray

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Steve2590
Posts: 6
Joined: Jul 2017

Sandy Ray,

Great words of advice and encouragement. So happy for you with your remission, I hope you never face it again. This is my second bout with cancer. I had surgery and radiation for prostate cancer in 2006. Last year I had my 10 year anniversary of basically zero PSA's.  I will be back to let you know how I am doing and to get advice. Thanks again.

 

Steve

Evarista
Posts: 87
Joined: May 2017

Hi Steve, just a quick note.  FISH stands for "fluorescent in situ hybridization" and refers to one of several molecular (DNA) tests done on blood and bone marrow cells. Sounds as though you are being seen at an NCI-designated cancer center and I imagine that they will do molecular testing to look for DNA changes. These test take several days to perform, so do not expect to get those results right away. Talk more later...Good luck.

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Steve2590
Posts: 6
Joined: Jul 2017

My cancer was diagnosed at Stage 4 but mainly on my skin. The PET Scan also showed a spot on one of my adrenal glands. Doc is not sure what it is but thinks it is also cancer.  I have to have that biopsied this week. It is rare for that to be Lymphoma but if it is the prognsis is not good.  Regardless I have multiple cycles of chemo ahead. Never had it before. Any thoughts or suggestions with coping with it? Thanks 

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Sandy Ray
Posts: 95
Joined: May 2017

Steve,

My Oncologist never really wanted to give a stage to me. When pressed he said 3B or 4 the B is becomes of some of the symptoms. In my researich I have found they do not list Lymphoma as stage 4 in many places. Whatever the case the idea is has spread to many locations. Mine was as well. Lymphoma stages are not like most cancers. The outcome is not as greatly affected as with other cancers. 

In response to Chemo it is not an easy questIon. There are so many types and each vary in how tough they are on you. When they tell you what type  you will be taking will be much easier for someone to give you some advice.  Some cause hair loss, some do not etc....  Just be comforted that they are much better at treating the side effects of the chemo than they used to be. My greatest fear was laying in bed with nausea all day. I never felt nauseous once. Of course that is different for everyone based on the Chemo and the person. My 2 worst side effects were constipation and it can be a real problem if you do not stay ahead of it. Drinking lots of water helps with this and for me some stool softeners and laxatives. Not a pretty subject but when you are drained and not a lot of energy things like that can be a big deal. My other worst part was Prednisone and it is not Chemo but a steroid . I had to take 100mg for 5 days. Everyone reacts to it differently. My only real reactions were my blood sugar went up and I had to go on no sugar or Carb diet for about 10 days until I had been off it for a while. I took it every treatment starting on the day of infusion and lasting 5 days. Did not make me sick just had to adjust my diet unless I wanted to take medicine for diabetes for 10 days. I chose to adjust my diet. The other issue was about 2 days after Coming off the Prednisone was crash day. Body ached low grade fever and I always tried to sleep a lot that day.

Of course your regime may not include the Prednisone. So back to my original statement knowing what kind of Chemo will give you a much better idea of what you are facing.

We are still here with you as you find out more we will do all we can to help. For me my Chemo on scale from 1-10 and 10 being unbearable I would say a 4. My biggest problem now is I am done with it and I am ready to get my energy levels back so I can feel like going out and doing something. My last treatment was 13 days ago so I know it will take time. By the way Chemo is cumulative so you get weaker as you go so do as much as you feel like on the front end. Because you will most likely not be doing much on the back end. Not to scare you it does not necessarily hurt but it does make you feel like you are 120 years old near the end. 

Sandy Ray

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Steve2590
Posts: 6
Joined: Jul 2017

 Thanks, it is great to have your support and tips.

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lindary
Posts: 578
Joined: Mar 2015

Part of the deal with chemo depends on which drugs you get. Some are harder on the system thant others. Drs do have meds to help deal with things like nausea and pain. There are probably other side-effects that can also be dealt with. One "drug" is prednisone. If given it can be a very high dosage (200 mg a day for 5 days) then stop. It's like running a 100 miles an hour then STOP. If you have to take this one I recommend planning a nap the last day and for 2 - 3 days after that. 

The other thing is water. When getting chemo the nurses may say you don't need to drink water because you are also getting saline. Then other nurses say it is best to be drinking water anyway during treatment. My take is to play it safe and drink the water. Medical recommendation is 2 liters of water day of chemo and for at least a week after to help flush out the dead cells and un-used chemo drugs. Other than that it is one day at a time. I was able to work the days between chemo sessions.  I am in IT so I worked aat home for the week after chemo and then in the office until the next chemo. 

Let us know how things go. 

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