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Roya - how's your Mom?

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Roya - your Mom must have had her second Treanda (Bendomustine) chemo now - thinking of her and wondering how it went? My 3rd is coming up next Monday and Tuesday. I have one week in the month I feel almost normal and book each day of that week to the nine's doing fun things with friends and hubby before chemo knocks me flat again. Hope your Mom's symptoms aren't so severe - they're usually not. Fran

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Good to see you post . I think of you and pray daily. Glad you have that week to live it up. Sure makes us appreciate life doesn't it? I am thankful everyday I drive to work. Blessing Joanie

nhldaughter
Posts: 69
Joined: Nov 2010

Hi Fran,

I just got on to find out about you and Sue (she had her last chemo on 12/14 when you were scheduled to have your 2nd, I think) and here I see a note for me. Thanks! :)
My mom is so-so. Half way through the first cycle her WBC hit the lowest and her fever wasn't going away. So we took her to the ER on a Saturday night, did a bunch of tests and came back. I think her system kicked itself back up and she felt better. Her 2nd treatment was last week. It was worse. She came home exhausted and had very horrible constipation...to the point where we thought we had to take her to the ER again. Now she is so-so, sometimes weak, sometimes okay. She has very little appetite. I was scheduled to teach the Winter Session (I teach at a Community College), but decided to give it up so I can be here with my mom and help my sister take care of her.
How are you, Fran? Good luck tomorrow with the 3rd cycle! I suppose you will have PET scan after this cycle. I pray for good results!

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Roya,
The treatments are definetely hard, but do-able. Your mom is very fortunate to have such caring supportive daughters...support and good care is half the battle. I haven't had any chemo, as you said, since Dec 14th, but I'm still VERY fatigued. You can expect your mom to be fatigued also and with each round the chemo accumulates making us even more tired. It's a long drawn out process, but the end results out weigh the hard times we go through...(knock on wood)! Please keep us up-dated, as we all care, and like to know how each of us is doing.You and your mother are part of this wonderful family and we are here to help. Much love...Sue (FNHL-2-3A-6/10)

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Thank you for your reply - I completely understand the low WBC counts - we've read in our research that 97% of patients on Treanda (Bendamustine) have that happen. I haven't had the fever and am so sorry it took your Mom to the hospital twice. How very wonderful of you to give up teaching (I was a teacher too, but elementary and middle school)to care for your Mom. She's a lucky lady!

Instead of the constipation, I have the opposite each time -diahrrea. Funny how each reacts differently. I did my 3rd treatments yesterday (Mon.) and today (Tues.) 7 1/2 hours first day, 4 today. The Benadryl given for allergic reactions makes me so sleepy I doze most of the time I'm in the chair. My hubby goes with me and does the same without any meds! Tomorrow I will feel great and hope to get food made for the feezer, cleaning and laundry done, etc. because I will crash the next day in bed and the bathroom for 10 days to 2 weeks. This seems to be the norm for several I've talked with now who are on this chemo. The steriod I take that's 20 times stronger than Prednisone lets me just sleep 2 hours a night. Didn't want to take it this time but he said I must. Has cut the dose down from 5 days to 3, and stopped the evening one in hopes it will help. The 2nd and 3rd weeks I go in 3 times for Neupogen shots - usually takes 6 to get my white cells back up.

Will your Mom be doing 6 or 8 sessions, or do you know? A new person I met in the Oncologist's waiting room my age and all the same types of NHL has just had her 6th Treanda and is waiting on CT scan results this week. She said 6 - everything I can read says 8. That takes me though June and will be a solid year of being on chemo since I started last June 2 with CVP-R that didn't work for me. Would LOVE to end in April instead!

Joanie - thanks for your comments - I think of you often and with your remission, it's great you still check on those of us who haven't reached it yet on this site! I'ts such a blessing.

Good luck to everyone as we strive to conquor this battle - Fran

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Fran,
Just hang in there you will be in remission soon. John(FNHL-1-4A-5/10) REMISSION 10-15

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Thanks, John - I hope you're right! It happened for you and now we must hope the same for Sue that's coming up soon - anxious to hear from her and hope CVP-R did the trick - Fran

nhldaughter
Posts: 69
Joined: Nov 2010

hi fran,

i came to see how you are doing... my mom's will be 4 or 6, he thinks...i didn't know it had to b 6 or 8. that scares me. we had the petscan this week and we'll see if it has worked on her so far. we'll find out next week, we're very nervous. i hope you are doing better. i pray that 6 works for you and you don't have to deal with this mess anymore.
in other horrible news we discovered my dad has an enlarged lymphnode in the exact same place as my mom's. now we have to start the testing process to see what it is. i pray it's nothing serious. i'm actually quite a mess right now, but trying to take it one day at a time. this cycle was a bit tougher on my mom. 2 weeks of feeling bad, these past 2 weeks have been good though. wed is the 3rd cycle and she is already nervous. as someone once said, i hope one day cancer kills itself!
Roya

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

HI Roya - so good to hear from you. I'm SOOOOOOOOOOOOO sorry about your Dad - how frightening that must be! I'll be praying for all of you - please let us know what the tests show for your Dad. I'm sure no one ever expected this to happen!

Your Mom had a CT scan after just 2 chemos? Haven't heard of that before. My first will be Monday after 3 and don't get results til Friday, Feb. 4. Will post when that happens - we're also very nervous. My large one in the abdomen doesn't look an ounce smaller - if I was suddenly flat again there after the earlier chemos, I would be more encouraged, but no change in appearance. Hopefully that doesn't tell the whole story.

I'm not saying this to make you more nervous and feel I have more severe reactions than others, but this 3rd time has been rough. This is the 20th day since, and I'm still nauseaus, dizzy and having terrible diahrrea. Usually by the 10th day I'm improving and can be out and about for 2 weeks still it starts all over again. Not this time. I had fun things planned each day this week with many groups I'm in and friends but only attended one and couldn't wait to get back home and crawl into bed. I plan to ask my Oncologist when seeing him next Friday if it's the cumulative effect - we've read most chemos get harder as the the time goes along because of so many drugs in your body. They are still there when you're hit again, so it makes sense. I pray 8 won't be necessary for me because I'm not sure I have the strength for 5 more. But you do what you have to do, so I'm sure I will find it somewhere. I've only chatted with 4 or 5 who have done this chemo and I've had by far the worse reactions to it, so will keep my fingers crossed it won't be this way for your Mom. Maybe you won't worry so much about it if it is, knowing it can happen.

Good luck - having both parents to care for must be a great strain on you - Caregivers are so under appreciated and patients sometimes forget how stressful it is on them too!

Have a good weekend - I've forgotten what part of the country you live in? It's beautiful in sunny FL today and supposed to get to the low 70's - Fran

nhldaughter
Posts: 69
Joined: Nov 2010

hi fran,
i just posted on your other thread about your scan resutls. i hope you are feeling better. as for my mom's ct after just 2 cycles, i feel like it's all experimental. the doc said he hasn't used B-R on grade 3A and since my sister had done enough research and asked him to go for it he is just doing things as he goes along. at first he had said 6 cycles total now he is saying 4 may be enough, but he does mention that he doesn't know and no one knows. for now since my mom's tumors seem to be gone, they were 2+ cm he is thinking 4 cycles. but, we don't know little ones might be there and grow again so he has no clue either.
i hope my dad's case is just a bad scare and goes away. :(
well, i'd better go and get some sleep. i'm in los angeles and it's midnight here. i start spring semester tomorrow and have to wake up early for work. after having a month off to be with my mom it will be hard going and facing students again.
hope you had a good weekend!
Roya

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Roya - just seeing this new post. My daughter moved from NYC to Santa Monica last year and I'm still having trouble with that 3 hour time difference! It shows you wrote this post at 3:05 but glad to hear it was midnight instead. Makes talking with her more difficult, that's for sure!

I hope you've found being back in class with students is exciting and takes your mind off all the health issues at home. You probably are ready for a break by this time and while teaching is hard work, there are many rewards as well. Good luck with getting back into the routine and you can feel very proud of all you've done to help your Mom and Dad. Fran

nhldaughter
Posts: 69
Joined: Nov 2010

Thanks, Fran! My mom will have 4th round this week. I believe it will be her last and then rituxen maintenance, don't know details yet, we will find out this week when we see the doc. My dad's lymphnode enlargement investigation got put on hold since they found a mass in his thyroid. He will have a biopsy this week to see what it is. It has been tough! We have appointments for mom and dad Tues through Fri this week.
I hope you are doing better and are handling this cycle ok. I haven't been able to visit much since we've been busy with mom and dad. But, you are all ALWAYS in my prayers!
Roya

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi - how fortunate for your Mom she only has to have 4 treatments and is doing so well - I'm very happy for her!

I go Monday and Tues. March 7 & 8 for my 5th chemo B/T. Because I'm showing the effects physically and mentally of 9 months of chemo, my Oncologist has reduced my total to 6 rather than 8 that was planned originally. Don't think I'd make it til June with it - still brutal each time for me. He did have me come back twice a week this last time for IV's of saline to hydrate me but this diahrrea is so debilitaing I can barely leave the house. Counting the days til it's all over!

I am scheduled for Rituxan for 2 years every 3 months. Not sure how I feel about that and still reading all I can about it. I am most interested in RIT's but at this time don't meet the qualifications for either of them. Will keep on researching and will look to see what you decide for your Mom. I'm sorry about your Dad needing a biopsy - let us know what the results are. Fondly, Fran and thanks for the prayers!

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Fran,
I was glad to see you post today, as I've been wondering how things have been going with you. You sure have been through a rough time fighting your cancer, and I'm glad your nearing the end of the harsh treatments and will be starting the R-maint. I have many questions also about the Rituxan and don't have a clue if it's the right way for me to go, but thats what my doctor wants, so I guess for now I'll just have to go with the plan and see how it pans out. If I come up with any new information on Rituxan I'll be sure to share, and please...you do the same...ok? So far I've not experienced anything weird or bad with the Rituxan, but I've only had one maint treatment. My R maint plan is one infusion every other month. I'll keep you posted on how it goes. So sorry about the dang diahrrea...thats got to be just terrible to deal with. Hang in there friend, and lets hope it gets better soon for you. I'll be keeping you in prayers and good positive thoughts! Much Love...Sue (FNHL-2-3A-6/10)

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