Large B-cell lymphoma

Rexmax

Good news

A very hugh thanks for all the encouragement from you all not only on the PET Scan results but being there from the beginning with all your suggestions and good vibes! I am really grateful I found this site, it's full of valuable information and I pray everyday for everyone going thru this. I will update as I go....Have a wonderful day!               Lillian

Rexmax

Nose bleed Questions

Hi all all of sudden my nose started bleeding and its dripping pretty good. Have any of you experienced this? It's only one nostril right now. Any info is greatly appreciated thanks 

PBL

Platelets?

Hi Lillian,

How is your blood count these days? Are you by any chance a little low on platelets?

Rexmax

PBL said:

Platelets?

Hi Lillian,

How is your blood count these days? Are you by any chance a little low on platelets?

Platelets

I don't know since I only get to see onc once every 3 weeks and that's when they do my blood work however I'm going to there tomorrow and talk with the nurses cuz it looks like my port has also turned sideways so want to get everything checked before next chemo on the 31st. I am also thinking platelets since I'm having a really hard time with any and all foods everything taste so awful I'm gagging I am doing 4 of the ensures a day and water and some days a little oatmeal will update as I go......Lillian 

lindary

bleeding and platelets

I got to the point I could tell when my platelets were low. I would blow my nose when I got up and there would blood in the tissue. If they got really low my gums would bleed a lttile when I brushed my teeth. The nose bleed was only the first time in the morning. This kept up throughout chemo. It was worse when I did the RICE The gums bleeding is something that happens when I don't floss regularly. The Drs weren't overly concern but I was to warn them if it ever became worse than what I had described.

 

Food. My daily standards were: Glass of Apple juice in the am. Yogurt mid-morning. Nutritional drink lunch. V-8 afternoon snack.  I did have solids when I could. I usually skipped lunch. My husband was on my case at first that I had to eat evry meal. I did more snacking than actual meals which he eventually got used to. 

Evarista

Rexmax said:

Platelets

I don't know since I only get to see onc once every 3 weeks and that's when they do my blood work however I'm going to there tomorrow and talk with the nurses cuz it looks like my port has also turned sideways so want to get everything checked before next chemo on the 31st. I am also thinking platelets since I'm having a really hard time with any and all foods everything taste so awful I'm gagging I am doing 4 of the ensures a day and water and some days a little oatmeal will update as I go......Lillian 

Yup, platelets

I definitely had nosebleeds when my platelets got low. To stop the bleed, remember that you have to squeeze your nose for a full five minutes.  And don't blow!  If it doesn't stop, you may need to check in with the medics sooner. Sorry the eating situation is getting better for you yet; hopefully it will soon.  Have you tried ice cream?  I found that Haagen Daz vanilla went down pretty easily and has a higher protein content that many other brands.  It is also extremely soothing if you have "mouth burn" going on.  Hang in there...You're half-way done, right?

PBL

Nausea, weight loss and weirdly sticking out port...

Lillian,

Normally, your port should be fastened in place by stitches on to your pectoral muscle - so, unless you've been trying to fly a golf ball to the moon or chopping wood all day, it shouldn't have changed position... Is it possible that you've lost weight, so it looks like it has a sharper edge?

Anyhow, Evarista's and Lindary's advice about small mouthfuls of ice cream and frequent snacking does make sense. I did find it helpful with the increasing nausea and vomiting, mouth sores and taste distortion as I was nearing the end of treatment - as you are now.

Is August 31st your fifth or sixth infusion? Hang in there, it's almost over. You will start feeling better in a few weeks.

PBL

Rexmax

PBL said:

Nausea, weight loss and weirdly sticking out port...

Lillian,

Normally, your port should be fastened in place by stitches on to your pectoral muscle - so, unless you've been trying to fly a golf ball to the moon or chopping wood all day, it shouldn't have changed position... Is it possible that you've lost weight, so it looks like it has a sharper edge?

Anyhow, Evarista's and Lindary's advice about small mouthfuls of ice cream and frequent snacking does make sense. I did find it helpful with the increasing nausea and vomiting, mouth sores and taste distortion as I was nearing the end of treatment - as you are now.

Is August 31st your fifth or sixth infusion? Hang in there, it's almost over. You will start feeling better in a few weeks.

PBL

Update

PBL I just love your sense of humor referring to golf balls and wood chopping lmbo, anyhow the port is good yes on losing the weight. Platelets perfect right in the middle ( had bloody nose again today) they think I might need a humidifier due to the extreme dry hot Arizona air. I live right smack in the middle of the desert. August 31st will be 5th treatment and last on September 21st. I did get a watermelon, puddings and other snacks today to try. Have a great day! I love this site....Lillian 

PBL

Good!

Lillian, thanks for the update. Glad to see everything is as it should be.

Hopefully the nosebleeds will resolve with the humidifier. In the meantime, don't blow your nose too hard.

... And start planning that celebration in a month or so!

PBL

Max Former Hodgkins Stage 3

Rexmax said:

Platelets

I don't know since I only get to see onc once every 3 weeks and that's when they do my blood work however I'm going to there tomorrow and talk with the nurses cuz it looks like my port has also turned sideways so want to get everything checked before next chemo on the 31st. I am also thinking platelets since I'm having a really hard time with any and all foods everything taste so awful I'm gagging I am doing 4 of the ensures a day and water and some days a little oatmeal will update as I go......Lillian 

Port

Rexmax,

I was toward the end of my 6 months of infusions at the infusion center one day, and 'felt" something under my collarbone.  I looked down, and could see a 'line' under the skin, with dots every inch or so.  I found it a bit frightening, and called the infusion nurse over, and asked her what it was.  She looked and replied that it was just my cath line from the port. 

I told her I'd never seen it before, and she replied that with patients who lost a lot of weight it was common for the lines to at some point appear under the skin.  She added that it was no issue and to forget about it.  My port the last two months did not noticably move, but seemed 'more exposed,' and pressing the infusion needles in seemed to hurt more than in earlier months (my center always sprayed my shoulder with some sort of numbing agent).  I do not know what the 'bumps' along the cath line were, but upon refllection, they may have been stitching also, to hold the line secure. I suspect that the movement is not problematic.

My port was removed seven years ago, and the incision area has gradually 'sunken in' a bit.  Having been in the Navy, I tell kids that it is my 'port hole.'

 

max

Max Former Hodgkins Stage 3

lindary said:

bleeding and platelets

I got to the point I could tell when my platelets were low. I would blow my nose when I got up and there would blood in the tissue. If they got really low my gums would bleed a lttile when I brushed my teeth. The nose bleed was only the first time in the morning. This kept up throughout chemo. It was worse when I did the RICE The gums bleeding is something that happens when I don't floss regularly. The Drs weren't overly concern but I was to warn them if it ever became worse than what I had described.

 

Food. My daily standards were: Glass of Apple juice in the am. Yogurt mid-morning. Nutritional drink lunch. V-8 afternoon snack.  I did have solids when I could. I usually skipped lunch. My husband was on my case at first that I had to eat evry meal. I did more snacking than actual meals which he eventually got used to. 

Agree !

Rexmax,

Chemo is no time to worry about 'good nutrition.'  I developed chemo-induced anorexia from the long term R-ABVD (a common thing) and my oncologist told my wife to "feed him anything he'll eat."   Some source of protein and some source of calories is critical, along with plenty of hydration.  Much of that was Ensure for me also.

'Food fetishes' are also common: these can be a bit weird.  Despite an uneasy stomach, I craved french fries and McDonald's fish sandwiches. And diet Lipton green tea -- I consumed probably a few gallons per week.  Don't ask why.  (There has been debate here over the years about whether consuming antioxidants such as green tea is rich in is advisable or not, but my doctor just answered that question by telling my wiife to 'keep funneling it in him.') 

A coworker told me once that as a teenager he almost died of NHL, and back then the treatment was MOPP, which is not used much anymore.  He had been a football lineman, and went from around 250 to under 150.  He said he craved and would only eat pot pie. So that's what he ate, pot pie.   Eat what you can tolerate and be happy about it for now,

max

Rexmax

Max Former Hodgkins Stage 3 said:

Agree !

Rexmax,

Chemo is no time to worry about 'good nutrition.'  I developed chemo-induced anorexia from the long term R-ABVD (a common thing) and my oncologist told my wife to "feed him anything he'll eat."   Some source of protein and some source of calories is critical, along with plenty of hydration.  Much of that was Ensure for me also.

'Food fetishes' are also common: these can be a bit weird.  Despite an uneasy stomach, I craved french fries and McDonald's fish sandwiches. And diet Lipton green tea -- I consumed probably a few gallons per week.  Don't ask why.  (There has been debate here over the years about whether consuming antioxidants such as green tea is rich in is advisable or not, but my doctor just answered that question by telling my wiife to 'keep funneling it in him.') 

A coworker told me once that as a teenager he almost died of NHL, and back then the treatment was MOPP, which is not used much anymore.  He had been a football lineman, and went from around 250 to under 150.  He said he craved and would only eat pot pie. So that's what he ate, pot pie.   Eat what you can tolerate and be happy about it for now,

max

French Fries

You are corret I eat whatever I can and have also had a few McDonalds fries not many but a few as I also crave them however I usually just do oatmeal and ensure every day as long as it's working that's good enough for me. Have a great day Lillian 

Sal0101

Humidifier

I also had bloody noses, ESPECIALLY after every hospital stay. Very dry eyes also.   I ran a humidifier constantly. Of course my platelets were always low at the same time. 

As far as food, I only remember losing my appetite and taste buds after my SCT. With R-chop and RICE, I don't remember having that problem, although I know I ate much less.  I did love watermelon and actually sliced my hand cutting it after my very first R-Chop!  Boy did my oncology team have a fit! I never did that again! Kellogg's Sugar Frosted Flakes were my favorite and about the only thing I ate for a few weeks after my SCT.  I agree...eat what you want, when you want!

Sharon

lindary

French fries

When I started chemo I read many blogs where people said that if they didn't feel like eating they had french fires. That was the go-to food for two family members that had cancer and a coworker. So when I got the point of not wanting to eat my husband made me some french fries. That was the only time I almost barfed. He was frustrated as he asked what did I want. I told him to make me some mac 'n cheese and that became my go-to food. Still love it.

Rexmax

Dry Mouth No Saliva

Hi all, since 5th R-chop a week ago I have NO saliva and extremely dry mouth. Anyone else have this if so does salvia return after treatment? I have one cycle left in 2 weeks. Also past week no food at all tastebuds awful even having to force whatever water I can get down, so only doing ensure with straw at back of throat. Starting to worry about blood counts for next Chemo. Any suggestions? Thanks 

Max Former Hodgkins Stage 3

Rexmax said:

Dry Mouth No Saliva

Hi all, since 5th R-chop a week ago I have NO saliva and extremely dry mouth. Anyone else have this if so does salvia return after treatment? I have one cycle left in 2 weeks. Also past week no food at all tastebuds awful even having to force whatever water I can get down, so only doing ensure with straw at back of throat. Starting to worry about blood counts for next Chemo. Any suggestions? Thanks 

King

Ask about "Dr King's Mouthwash." It is used by chemo patients against the development of mouth sores.  I do not know how available it is, but was popular in northwest SC, where I underwent treatment.  I learned of it at my infusion center.  Dry mouth can cause gum issues, so sip fluids when awake; that by itself might help some. Do ask you r doctor first however, before trying any home remedy. I do not know if the mouthwash has FDA approval.

Loss of taste is common with several chemo drugs, but taste returns within a month or less after ending chemo for most patients. In R-CHOP, the Vincristine is likely the cause.  I cant recall exactly now, but I had no sense of taste for several months on R-ABVD.  In ABVD, the Vinblastine is the casue, a sister-drug to Vincristine, almost identical.

max

Evarista

Rexmax said:

Dry Mouth No Saliva

Hi all, since 5th R-chop a week ago I have NO saliva and extremely dry mouth. Anyone else have this if so does salvia return after treatment? I have one cycle left in 2 weeks. Also past week no food at all tastebuds awful even having to force whatever water I can get down, so only doing ensure with straw at back of throat. Starting to worry about blood counts for next Chemo. Any suggestions? Thanks 

Mouth "burn"

Mucous membrane issues are pretty common...I had serious burn of my mouth and could only eat very, very bland foods.  Dry mouth is probably related.  You can ask your doctor for a prescription of "Magic Mouthwash" from your pharmacy.  This is a made-to-order compound (you'll need a pharmacy that does "compounding") containing lidocaine, maalox, and benadryl. You gargle it and it numbs and soothes.  In the meantime, avoid salty foods, even though they taste good. No chips, salted nuts, etc.  Try to get your salt from things like cheese instead.  Hang in...Almost done!

Note that if you are allergic to novacaine, etc., this mouthwash will not be usable. Ask you doctor for a suitable substitute.

ashsaj

NHL - stage 4 - 55years Male

My dad has been diagnosed recently of B cell NHL.  after his first chemo, he has been experiencing severe body pains starting from 6th day . has anyone experience this before? 
Onc suggested some pain killers to take thrice a day, but they are causing more disturbance. 

Evarista

Body pain or bone pain?

Hi Ashsaj, sorry to hear about your dad; hopefully he is tolerating the chemo OK otherwise.  About the severe body pains 6 days after the end of chemo: did he get either Neulasta or Neupagen after the chemo?  One of these is typically given within 48 hrs of finishing a round to boost the white blood cell count.  They are notorious for causing bone pain, which can be quite severe.  Other than pain killers (assume he was told to use acetomenophen as opposed to aspirin or ibuprofen), many people report that over-the-counter Claritin (loratadine) can be very helpful.  I was completely knocked out with pain after my first round of chemo and my clinic recomended this. It did the trick in all subsequent rounds (DA-R-EPOCH).  Ideally, start a few days before the Neulasta/Neupagen shot. Why this helps is unclear, but if you google "neulasta bone pain", you will find many, many anecdotal reports by people who have tried it. Note that it needs to be loratadine, not any other anti-histamine.  Generic is fine.

Also please note that I am not a physician and any meds that your dad plans to take should be checked with his medical team first. Good luck with it and I really hope he can find some relief.

lindary

Claritin

I agree about the Claritin. I didn't have a problem with the nuelasta shot I got after the R-Chop but when I was going through the stem cell prep it was another story. I was getting mega doses of Nuepogen to up the stem cell growth. That was the first time I really felt the bone pain. When I mentioned it to a nurse she was surprised no one had told me about using Claritin. Before getting the second shot I took a Claritin and it worked!