Time has come to face the dragon!

homegirl

My name is Martha, and I am a 60 year old grandmother of 5 grandsons, and mother of 1 daughter and wife of 42 years to a wonderful and supportive man. Thats all the important stuff.
My dx is fNHL, 3A, extensive involved lymph nodes, no bone marrow. Largest node 5.4 cm, others 3+. Thats my dragon.
Weapon of choice R-CHOP to begin Monday. Getting a port placed tomorrow a.m.
I have been quietly reading posts on here, but as my time approaches to face this I sure could use some moral support. My family is great, but there is no way they can understand. I am sure you all know what I am talking about.
Anyway I would appreciate any tips anyone can give me. I have read various articles on tips for surviving chemo, but would like to hear from others experiences. One question I have - I am suppose to start taking the predisone Monday, should I take it as early in the morning as possible? I know people say it causes you not to be able to sleep, does it help taking it early? Should I ask the doctor for a sleeping aid immediately or see how it goes? How far a head of my appointment should I take the anti nausea meds? Should I ask for anxiety meds? I think my anxiety level is increasing, I dont want to be a zombie, but I don't want to make my husband miserable either.
Thanks.

cookingirl

We're here for you
Hi Martha - good to hear from you. I'm Fran from Florida (68) and have had F NHL, stage 4, B cell, Indolent for two years now. My first 9 months were "watchful waiting" and when my abdominal tumors grew to 15 cm, they started chemo immediately. I did two the past year without a break - CVP-R and Treanda. That only leaves CHOP-R for me if they do more chemo, but I seem to be chemo resistant. You're lucky with the size of your tumors - even after two chemos, my largest didn't get down to the size of yours now. So I feel sure CHOP will just take it all away for you and we'll hope every day that happens.

I was directed to take all my meds - Prednisone, 2 Tylenol's and antinausea one hour before coming in on chemo days. My last type was a two day treatment. There's a numbing cream (prescription) the Oncy. can give you you also rub on your port an hour before going in that makes the needle painless - ask about that. Yes, Prednisone has always kept me awake 24/7 so I ask before taking it for a sleeping pill. Most Oncy.'s give without your asking a type of sedative or anti-anxiety pill so if yours didn't, just ask for that. The anti-nausea bag they give you before the chemo kept me from ever getting the least bit nauseaus and hope it works that way for you - it does for almost everyone. Sure not like 10 or 20 years ago! Please post again and let us know how you're doing - Fran

COBRA666

Treatment
Homegirl,
I am sure you have read we all react differently to all involved here. My name is John and I was diagnosed in May 2010 with FNHL stage 4 grade 1 With no symtoms.I was treated with R-CVP and currently in remission. I am 62 years old. The pred. affects us all differently. You will see when some others respond to you. All it did to me was kept me up all hours of the night. Some people got hyper with it. I found it best to take the meds first thing in the morning. I was never sick or even felt sick the entire time. You will be ok,but there will be times you will feel like a bus has run over you.Especially as treatments progress. Good Luck and stick with us.We will see you thru this. John

KC13167

R-chop
Hi Martha,

I am 52 years old.

I had 6 rounds of r-chop last year for DLBCNHL stage IV and went into remission in October 2010. I did not have any oral pre Meds to take before my infusions. I did get quite a few pre Meds via my port before the chemo was hung. I think that it's best to take your prednisone early in the morning because one of the most common side effects is sleeplessness. I did experience some nausea, usually related to odors, the anti nausea Meds worked great- no vomiting at all! I agree with the comment about sleeping Meds, yes, do ask for them.

Make sure that you drink a lot! The chemo and the dead cell matter that it produces need to be flushed out to avoid kidney complications. Listen to your body. Sleep, eat, rest, exercise; when you feel like it. You will find that your body will develop a routine based on your infusion cycles. I found this helpful, especially when people wanted to come to visit me. I had some tenderness in my mouth, in retrospect, I should have used a mouth rinse after each meal.

Good luck to you. It sounds as if you have a great support system, let them help you! Let us know how you're doing.

Kellie

allmost60

Questions/Martha
Hi Martha,
I have the same cancer as you and I'm also 60 years old...married 32 years, with 2 sons and 3 grandchildren. My chemo was CVP-R, total of 6 rounds given every 21 days. The prednisone was hard. As a matter of fact, it was the worst part of chemo for me.I always took my pred an hour before going in for chemo. On the following 4 days I'd take it as early as possible in the a.m but still had problems sleeping come bedtime. If your doctor offers a sleep aide, take it. I didn't experience any nausea throughout my chemo, but had two different meds on hand just in case. Zofran and compazine(sp?). I did have hair thinning, but didn't lose it completely. It has grown back quite nicely and it wasn't as big a deal as I thought it would be. I thought for sure I was going to be bald, but didn't. You might knowtice as treatments progress that the fatigue will increase. By the end of treatment, fatigue is very common and lots of resting and naps will be needed. It's all do-able but by no means "a walk in the park". I have a power port and haven't had any problems with it. Some hate it, others are ok with it...I hope you will be ok with yours. Please come back and let us know how things go tomorrow with your port placement. Others here have done the R-CHOP and will be able to share exactly what their experience was with it. I've been told the CVP-R is less harsh than the R-CHOP, so your chemo experience may be somewhat different than mine. My good thoughts and prayers are with you Martha, and I hope to hear more from you. Best wishes...Sue (FNHL-2-3A-6/10)

JoanieP

Homegirl
Welcome to this site. Trust me there are wonderful people on this site and so caring. I am 64 and I was dx in Jan 2009 with Follicular stage three. I had RCOP with no naseau and the predison was given for 5 days after chemo. The fist night I didn't sleep but did after that. My chemo started Mar 9, 2009 and I was cancer free June 2 and have been for over two years. I am a teacher and have been back to work for 2 years. Each chemo you get a little more tired. I drank lots of water with a small amount of cranberry juice in it. I was careful not to kiss anyone except my husband. I feel blessed every day . I have a new outlook on life, started a support group in our church and love life. Please know we are here for you. I am going on vacation on Tuesday but will check in. I had my port out in a year as my veins were good. God bless your journey. Trust me on the other side of this, life will be more precious than ever. joanie

homegirl

JoanieP said:

Homegirl
Welcome to this site. Trust me there are wonderful people on this site and so caring. I am 64 and I was dx in Jan 2009 with Follicular stage three. I had RCOP with no naseau and the predison was given for 5 days after chemo. The fist night I didn't sleep but did after that. My chemo started Mar 9, 2009 and I was cancer free June 2 and have been for over two years. I am a teacher and have been back to work for 2 years. Each chemo you get a little more tired. I drank lots of water with a small amount of cranberry juice in it. I was careful not to kiss anyone except my husband. I feel blessed every day . I have a new outlook on life, started a support group in our church and love life. Please know we are here for you. I am going on vacation on Tuesday but will check in. I had my port out in a year as my veins were good. God bless your journey. Trust me on the other side of this, life will be more precious than ever. joanie

Thank you
I so appreciate everyones comments and positive support as my time approaches and my anxiety increases. It is good to hear from others who have faced this at this stage in life and had good responses. I also appreciate the tips. Talked to the nurse today and she said to take 50mg pred in the am and the other 50mg in the afternoon. I am going to ask the doctor for a sleeping aid, and something for anxiety. He seems to be the type that treats the disease, not the patient, so I will be telling him what I want! Glad to hear that naseau is will controlled, I hate the thought of being sick.
Got my port in yesterday morning, came home took a couple of vicodin and slept the rest of the day. I was suprised how sore my arm was, but feels better today.
Will let you all now how my day goes Monday. Martha

allmost60

homegirl said:

Thank you
I so appreciate everyones comments and positive support as my time approaches and my anxiety increases. It is good to hear from others who have faced this at this stage in life and had good responses. I also appreciate the tips. Talked to the nurse today and she said to take 50mg pred in the am and the other 50mg in the afternoon. I am going to ask the doctor for a sleeping aid, and something for anxiety. He seems to be the type that treats the disease, not the patient, so I will be telling him what I want! Glad to hear that naseau is will controlled, I hate the thought of being sick.
Got my port in yesterday morning, came home took a couple of vicodin and slept the rest of the day. I was suprised how sore my arm was, but feels better today.
Will let you all now how my day goes Monday. Martha

Your welcome Martha.
Hi Martha,
Thanks for checking back in. I'm glad all went well for your port placement. After mine, I think I was sore for a couple of days, but nothing too un-comfortable. Took a bit of time to get use to the little bulge showing from under the skin, but after a year of having it in, I no longer give it a thought. Wow...you will be taking 100 mg of pred a day? I only took 60 mg's and thought that was extreme. I'm sort of a hyper person by nature, so I may not be the best example of how prednisone does for everyone else. I'm a whack job while on it...seriously. I hated it so much that I hid the bottle in my underware drawer after finishing the 5 day course and wouldn't bring it out until the next round of chemo was scheduled. Sounds extreme, I know, but just seeing the bottle gave me the creeps. Sooo glad you will be asking for anxiety meds and a sleep aide...got a feeling with 100 mg of pred, you will be happy for the extra relief. Try to stay as peaceful as possible until Monday, and if you get too anxious, just come back here and we can get you through the weekend jitters. Been there, done that, and this fine group of people always got me through. Take care, and my thoughts and prayers will be with you. Much love...Sue (FNHL-2-3A-6/10)

KC13167

allmost60 said:

Your welcome Martha.
Hi Martha,
Thanks for checking back in. I'm glad all went well for your port placement. After mine, I think I was sore for a couple of days, but nothing too un-comfortable. Took a bit of time to get use to the little bulge showing from under the skin, but after a year of having it in, I no longer give it a thought. Wow...you will be taking 100 mg of pred a day? I only took 60 mg's and thought that was extreme. I'm sort of a hyper person by nature, so I may not be the best example of how prednisone does for everyone else. I'm a whack job while on it...seriously. I hated it so much that I hid the bottle in my underware drawer after finishing the 5 day course and wouldn't bring it out until the next round of chemo was scheduled. Sounds extreme, I know, but just seeing the bottle gave me the creeps. Sooo glad you will be asking for anxiety meds and a sleep aide...got a feeling with 100 mg of pred, you will be happy for the extra relief. Try to stay as peaceful as possible until Monday, and if you get too anxious, just come back here and we can get you through the weekend jitters. Been there, done that, and this fine group of people always got me through. Take care, and my thoughts and prayers will be with you. Much love...Sue (FNHL-2-3A-6/10)

Pred FYI
My r-chop pednisone dose was 100 mg a day too. I guess each protocol has a different dosage.

Kellie

cabinlife

new At This
Martha, this is my first reply. My name is Donna. We seem to have many things in common. I was just diagnosed with fNHL stage III. I am 60 and have one grandson. I have been married 40 years. I have many nodes involved but no bone marrow involvment yet. My doc wants to watch and wait. I see her again in three months. I hope your treatments go well and you get the BEST treatment out there. Good luck.

allmost60

cabinlife said:

new At This
Martha, this is my first reply. My name is Donna. We seem to have many things in common. I was just diagnosed with fNHL stage III. I am 60 and have one grandson. I have been married 40 years. I have many nodes involved but no bone marrow involvment yet. My doc wants to watch and wait. I see her again in three months. I hope your treatments go well and you get the BEST treatment out there. Good luck.

Welcome
Hi Donna,
Welcome to our group. As you can see while reading through the various postings, many of us here have of things in common with our cancer. One common thing I knowtice is how many of us with FNHL stage 3 or 4 seem to be so close in our age. I'm also 60, been married 32 years and have 2 granddaughters and one grandson. My newest granddaughter just turned 2 months old on the 9th. The other will be 21 in Sept and our only grandson just turned 19. Watch and wait is a common approach with the indolent FNHL. My Onc had me do it in the beginning, but it only lasted one month. When she found a small new tumor under my jaw line during a routine monthly check up she decided to go ahead and start my chemo. Many here have done the watch and wait, and I hope you can continue for as long as possible. No sense to start the chemo unless absolutely necessary, in my opinion. Take care and please come back and keep us informed on how you are doing. Best wishes...Sue (FNHL-2-3A-6/10)

cooky38

allmost60 said:

Welcome
Hi Donna,
Welcome to our group. As you can see while reading through the various postings, many of us here have of things in common with our cancer. One common thing I knowtice is how many of us with FNHL stage 3 or 4 seem to be so close in our age. I'm also 60, been married 32 years and have 2 granddaughters and one grandson. My newest granddaughter just turned 2 months old on the 9th. The other will be 21 in Sept and our only grandson just turned 19. Watch and wait is a common approach with the indolent FNHL. My Onc had me do it in the beginning, but it only lasted one month. When she found a small new tumor under my jaw line during a routine monthly check up she decided to go ahead and start my chemo. Many here have done the watch and wait, and I hope you can continue for as long as possible. No sense to start the chemo unless absolutely necessary, in my opinion. Take care and please come back and keep us informed on how you are doing. Best wishes...Sue (FNHL-2-3A-6/10)

grandkids
sue i will be 54 this month and my kids have given me 11 grandkids 6 grandsons and 5 granddaughters. I try not to pick but i have one that comes racing thru the house yelling nan-na. denise

allmost60

cooky38 said:

grandkids
sue i will be 54 this month and my kids have given me 11 grandkids 6 grandsons and 5 granddaughters. I try not to pick but i have one that comes racing thru the house yelling nan-na. denise

Wow!
Hi Denise,
11 grandkids...WOW! Thats a small tribe!..haha! You must be one busy gramma! I can't wait for Lizzy to come running through the door calling me anything she wants to call me..ha! She got her first set of baby shots this morning and my daughter-in-law said it hurt "her" more than it did Lizzy...ha! I remember feeling the same way when my boys had their first shots. Have fun with all of those special grandkids nan-na. (o: Love...Sue (FNHL-2-3A-6/10)

homegirl

KC13167 said:

Pred FYI
My r-chop pednisone dose was 100 mg a day too. I guess each protocol has a different dosage.

Kellie

pred
Kellie how did you take your pred? I took one this morning, and the other about 5 this evening. So far do not feel to bad, in fact a little sleepy. Will see soon how I sleep.

Martha

homegirl

cabinlife said:

new At This
Martha, this is my first reply. My name is Donna. We seem to have many things in common. I was just diagnosed with fNHL stage III. I am 60 and have one grandson. I have been married 40 years. I have many nodes involved but no bone marrow involvment yet. My doc wants to watch and wait. I see her again in three months. I hope your treatments go well and you get the BEST treatment out there. Good luck.

New
Hi Donna, looks like we will be learning alot together. I pray for the best for you also and hope to stay in touch. Martha

SwampGatorz

BEACOPP
Hello, My name is Tim, 52 years old and I was diagnosed with IVB Hodgkins a few months ago. My Dr. has started me on the BEACOPP regimine and I have finished 3 cycles (21 days each) to this point. Feeling much better since starting the chemo. I will have a PET scan done followong the 4th cycle to see where it all is at. Considiering how I felt before the chemo, I would have to say that the chemo is working, we just have to see how good. As far as chemo side affects go, I have have not really had to many. The fatigue is about all I have gotten except for the neulasta shot (white blood cell stimulator) gets me alittle achy for about 24 hours after the shot. It is very important to keep a positive look on things as this can really mess with you. Your emotions go in all directions, but the good thing is there is help that you can recieve that works. Although it may be a littel rough at times keep your head UP and be positive. Hope you get well very soon as I wish this to everyone dealing with this illness.

KC13167

homegirl said:

pred
Kellie how did you take your pred? I took one this morning, and the other about 5 this evening. So far do not feel to bad, in fact a little sleepy. Will see soon how I sleep.

Martha

Pred
Martha,

I took my 100mg of prednisone first thing in the morning for five days following my R-CHOP. Good luck to you. The infusions will go smoother. I was never symptomatic during a treatment. The time I spent in the chair varied from 8-6 hours. That doesn't count the lab work or final OK from my oncologist. Bring something to keep you occupied! I brought my kindle, iphone and a comfy travel pillow. Occasionally I brought my computer but usually fell asleep before I could even pick something out to watch! We used to really make a day of it! My fiancé would go with me, at lunchtime, my father would show up with lunch. Yummy!

Kellie

allmost60

SwampGatorz said:

BEACOPP
Hello, My name is Tim, 52 years old and I was diagnosed with IVB Hodgkins a few months ago. My Dr. has started me on the BEACOPP regimine and I have finished 3 cycles (21 days each) to this point. Feeling much better since starting the chemo. I will have a PET scan done followong the 4th cycle to see where it all is at. Considiering how I felt before the chemo, I would have to say that the chemo is working, we just have to see how good. As far as chemo side affects go, I have have not really had to many. The fatigue is about all I have gotten except for the neulasta shot (white blood cell stimulator) gets me alittle achy for about 24 hours after the shot. It is very important to keep a positive look on things as this can really mess with you. Your emotions go in all directions, but the good thing is there is help that you can recieve that works. Although it may be a littel rough at times keep your head UP and be positive. Hope you get well very soon as I wish this to everyone dealing with this illness.

Welcome
Hi Tim,
Welcome to the group. I did some reading on your chemo regimine and knowticed 3 of the 7 components of your regimine were the same as mine. Cyclophosphomide-Vincristine<(O)and the prednisone. I'm glad to hear you have had minimal side affects. I think fatigue is something we all get from any chemo protocol thats given. I was wiped out at the end of my 6 rounds of treatments. I feel pretty good most days, but still experience some fatigue and sore achey joints. Please come back and share with us how you do as your treatments continue. My prayers and good thoughts will be with you. Best wishes...Sue (age 60)
(Follicular NHL-grade2-stage3-typeA-diagnosed 6/10)

moftexas

Welcome to the club no one wants to join!
I also have fNHL, 4A. I received RFND plus Zevalin on a clinical trial for mine. The Prednisone made me very irritable. I took sleeping pills so I could sleep. Never had any nausea from the treatments - the IV anti nausea drugs given before the chemo worked great. In fact the Prednisone gives you an appetite, so I gained weight.

Really try to drink as much as possible (no, not Margaritas!) It helps your kidneys and your digestion. I know this is indelicate, but constipation can be a real problem, so watch out for that.

At first I took anxiety meds cause I was so scared, but quickly got off them because once I knew what I was facing, I wasn't so worried. Good luck and keep us updated on your progress.

MofTexas