Large B-cell lymphoma

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  • Rexmax
    Rexmax Member Posts: 55 Member
    edited June 2017 #22
    Large B-Cell Lymphoma

    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!!! 

  • lindary
    lindary Member Posts: 711 Member
    edited June 2017 #23
    constipation

    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
    Rexmax Member Posts: 55 Member
    #24
    Update and questions

    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
    Sandy Ray Member Posts: 143 Member
    #25
    Constipation and 2 types of Lymphoma

    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
    Rexmax Member Posts: 55 Member
    #26
    2 different lymphomas at same time

    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
    Sandy Ray Member Posts: 143 Member
    #27
    Water

    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
    Evarista Member Posts: 336 Member
    #28
    How to up your fluids

    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
    Rexmax Member Posts: 55 Member
    #29
    Flavored water & meal replacements

    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
    Evarista Member Posts: 336 Member
    #30
    About Ensure

    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
    lindary Member Posts: 711 Member
    #31
    Ensure

    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
    Rexmax Member Posts: 55 Member
    #32
    Constipation & tastebuds!

    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
    Evarista Member Posts: 336 Member
    edited July 2017 #33
    Food struggles

    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.

  • PBL
    PBL Member Posts: 366 Member
    edited July 2017 #34
    Dietary adjustments

    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
    Rexmax Member Posts: 55 Member
    #35
    Evarista said:

    Food struggles

    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.

    Thanks

    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. 

  • Rexmax
    Rexmax Member Posts: 55 Member
    #36
    Thanks

    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
    Rexmax Member Posts: 55 Member
    #37
    Dry Skin

    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
    PBL Member Posts: 366 Member
    #38
    Shower oil became my best friend!

    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
    lindary Member Posts: 711 Member
    #39
    V8

    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
    Evarista Member Posts: 336 Member
    #40
    Dry skin, etc.

    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
    Rexmax Member Posts: 55 Member
    #41
    Evarista said:

    Dry skin, etc.

    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!

    Dry skin

    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 

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