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Results of Monday CT scan/ Treanda

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

Hi all - finally got results this afternoon from Monday's CT scan after doing Treanda chemo since November. Not exactly what Sy and I nor my Oncologist wanted, but it was about a 30% remission. The mass decreased in size from 8.2 x 5.5 cm to 5.8 x 2.7 cm. As my Optimist husband said, it hasn't grown and though small lymph nodes remain, no evidence of any new masses are growing.

My Doctor sent me to the hospital for more extensive blood work - a more detailed analysis than is done each week in his office. He's concerned because I've been in chemo treatment now for 8 months and he said, "Though you always have a smile on your face, you're showing effects of long term chemo exhaustion." He's changing my chemo to a lower dose I may tolerate with less than 3 weeks side effects and prescribing new medications. Also bringing me back the day after chemo for a shot that's helpful for several symptoms, as well as extra hydration by IV. Hoping those things will shorten my weeks of feeling crummy. Can't do a thing for the total exhaustion and fatigue but we all know how that is! My "new normal" as I've seen several of you mention on this site is a far cry from my old energy, but that's just the way it is.

Thanks for all your prayers and words of encouragement - appreciate them so much. Fran
NHL, Follicular, stage 4, B cell, grade 3, Indolent

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Fran,
I know its not what you were expecting,but it is some headway. At least they are shrinking and not growing. The exhaustion thing itself really makes you feel down. I felt that way for a few months during and after the chemo and can just imagine what you are going thru. This crap sucks and theres no other way to say it.We have to do what they tell because they are the EXPERTS??? You and I both know we are experiments in progress with these chemicals. Fortunately a lot of them are working. I don't think any of us would be here today if not for the progress that has been made in the past few years. One day people will be able to take a pill and it will all be gone. Since that is in the future and this is today we have to go thru all this stuff to just reach some sort of remission. It may take a while but you will get there and we will be right there behind you.John(FNHL-1-4A-5/10)

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

Thank you John, Sue, Liz and Mary for your positive and compassionate thoughts. All so well put and comforting to read. What would I do without you guys? You've all been where I am and are living testimony that good things happen - I appreciate you!

I do think the larger tumors must be harder to reduce and penetrate than the 2 and 3 cm ones. It's just going to just take longer and I must have patience!

Have a happy Sunday tomorrow and prayers are with each of you from me - Fran

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Fran,
I know the feeling, but as your hubby said it hasn't grown AND it IS shrinking. That ='s progress. I think some of these tumors we get are just tougher than some of the others growing in us, and it just take a little more time to knock them down. I'm glad to hear your doctor is working with the harsh side effects you have been dealing with. All of the treatments have really been hard for you. I just know how your feeling Fran, and I'm so sorry. You know we are here for you...wish there was more we could do...words typed sometimes just doesn't feel like enough..ya know? Take care and rest...
Love..Sue (FNHL-2-3A-6/10)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Fran,

Looks like at least there is progress while there has been a lot of going on in your treatments. Hope this gets little easier with the changes you mentioned. I am amazed at how far you have gone in your efforts to get through! As always, I send you lots of positive thoughts and good luck your way.

Liz

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

So sorry to hear that your results were not everything you wanted to hear YET. But do keep the faith as many folks here have experienced the same thing. As others have said there has been progress. No change would have been harder to take. I agree with others that some times some areas are just more stubborn and take a little longer. I like that your MD is taking such good care of you and doing all of the things necessary to protect your overall health. How many treatments are left? Mary

yesyes2
Posts: 461
Joined: Jul 2009

Hi Fran,

Just wanted to say I'm thinking of you and sending lots of positive thoughts and prayers as you continue your fight against this beast. You are sure a fighter and your husband sounds great. I know your results were not what you had hoped for but sounds like your onc has a plan and he is tailoring it just for you. I think there may be something to your thinking larger tumors take a bit more treatment, or something alittle different, to kick them dead. But I have faith you will get there.
Love to you,
Leslie

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

Thanks for your encouraging words, Leslie! What else can we do but fight? If we give up, then it's over. Children, Grans, etc. keep me searching for the right treatment that will give me as many years as possible. So thankful for this site we can share ideas and knowledge on. My husband Sy IS a Godsend - don't know how I'd make it without his research, help and encouragement.

Now I must go make some Super Bowl foods for him - our first year I can remember without a party, but no energy to even attend one this year! Fran

yesyes2
Posts: 461
Joined: Jul 2009

Fran, I'm sure this one will be extra special as you can look at it as wonderful alone time with Sy. Maybe that's because I love spending alone time with just my husband.
Enjoy, Leslie

nhldaughter
Posts: 69
Joined: Nov 2010

Fran, I came to check on your scan results. 30% shrinkage and no growth is GOOD! I know it doesn't seem good, but think of how R-CHOP didn't do much and this B-R did that with 3 treatments! I continue to pray for you and await to hear you say those darn big ones are all gone! Hang in there...
My mom's scan had good results, he said 2 more cycles and then probably rituxen maintainance for a year. My dad's appt with a surgeon is next week, we have to see what his lymphnodes are up to. We are all still very stressed, but are thankful to God for the good news with my mom.
Roya

Newfoundcancer
Posts: 40
Joined: Jun 2010

Now matter what kind of results come back, keep fighting.
Never get depressed, think of it as a long term process.

711tom
Posts: 44
Joined: Mar 2010

I too am sorry the results were not better but as is said above, the tumor is shrinking and no there are no other hot spots. I am also glad they are going to alter your chemo, 8 months is a long time and while I do not know you well, your attitude and toughness have inspired me greatly. Keep the faith and stay strong and I continue to pray for you and all on this board!

George

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

Thanks so much for all of your encouraging replies. Roya - so happy your Mom had good results and pray your Dad will too. How sad they both are fighting this cancer at the same time! And so stressful for you in the caregiving area, I'm sure.

It sure seems I'm living in the Dr.'s office and Infusion lab this week - all 5 days! Including an 8 hour on Monday, 4 hours yesterday and just two today as they're trying to give me bags of saline to keep me hydrated and see if it helps my symptoms. Tomorrow will tell the tale since it's been the day the past 3 months I wake up and can barely move. We'll see what happens! Thanks for all the prayers and very kind words from so many of you - you're all GREAT and we're in this together - such a help! Fondly, Fran

miss maggie
Posts: 929
Joined: Mar 2010

Dear Fran,

It just is so rough waking up exhausted after having a full nights rest. Many months ago I too woke up exhausted each morning. I had to get up so much earlier to pull myself together to start the day. When you think about it, how can you not be so tired after 8 months of chemo.

Just think of it this way. Your doctor sounds wonderful and concerned. I know that is the reason he wants you at the office each day. Yes, dehydration can knock you for a loop. A few months ago, a friend of mine was always tired and listless. A blood test revealed low potassium levels. Her doctor gave her some medication, and she started eating a banana everyday. She didn't have chemo, but was exhausted never the less. She ia a diabetic.

You are so right. We are all in this together. It will take time, but you will get there.

Prayers and positive thoughts your way. Love Maggie

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

Thanks so much for all of your encouraging replies. Roya - so happy your Mom had good results and pray your Dad will too. How sad they both are fighting this cancer at the same time! And so stressful for you in the caregiving area, I'm sure.

It sure seems I'm living in the Dr.'s office and Infusion lab this week - all 5 days! Including an 8 hour on Monday, 4 hours yesterday and just two today as they're trying to give me bags of saline to keep me hydrated and see if it helps my symptoms. Tomorrow will tell the tale since it's been the day the past 3 months I wake up and can barely move. We'll see what happens! Thanks for all the prayers and very kind words from so many of you - you're all GREAT and we're in this together - such a help! Fondly, Fran

shirleywirley
Posts: 1
Joined: Dec 2010

Hi im new on this site and have been diagnoised with follicular lymphoma on 2nd dec 2010,Im sorry im just learning on the computer.I am so impressed with the support and info ive been reading and peoples comppassion.I live in NewZealand and we dont have the networking like this site and it can get as you no hard confusing and lonely.It has been so helpful reading other peoples journeys be cause at moment im in 2nd rd of chemo and i feel so bad and so exchausted like everyone who has chemo.Because i live on my owm with very little support i thought i would try internet for info and support and found this site.i would appreciate anyones advice for nausea that they have found helpful and dizziness .Thankyou Shirley

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

Shirley - haven't talked with anyone from New Zealand before - so glad you found us. You were diagnosed on my birthday - Dec. 2 and you're in chemo already. Can you tell us the exact type you have? I'm follicular, stage 4, Indolent, B cell, grade 3. What chemo drugs are you on? Please don't feel like you don't have support because you will find it here.

We have wonderful anti-nausea drugs put in through IV's before chemo starts, so I haven't had that as one of my most serious side effects. I tried Zofran but it made me very dizzy. Lorazepam (Ativan) is taken before chemotherapy and later by mouth for nausea, vomiting and anxiety. That one has helped me the most. A nurse on this site recommended an old one but my Oncologist thinks it's quite good and I have a prescription but haven't needed it yet - it's called Chlorpromazine. I would guess some of your drugs may differ than ours in the states.

Please stay in touch and let us know how you're doing - we care. Fran

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Shirley,
Fran has said it all. We are here to help you in any way we can.I also have follicular stage 4 grade 1 non hodgkins. John

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Shirley,
I was diagnosed in June with Follicular NHL grade2 stage3. My tumors were in my left groin, left side of neck and clavical anatomy and the back of my abdomen. I finished my 6 rounds of chemo..CVP-R on Dec 14th and will be starting my rituxan maint on Monday. I didn't have any nausea with my chemo but had a really rough time with the prednisone. Welcome to our group and let us know a little more info on what kind of chemo you are doing. Take care...Sue (FNHL-2-3A-6/10)

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