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"MERRY CHRISTMAS"!

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

MERRY CHRISTMAS!!!

 I hope all of you are having a wonderful day with your families! SmileSorry for not posting more often, but honestly, I've just been overwhelmed with so much that's gone on since we've moved to the river. We love it here and couldn't be happier, but this stupid cancer just isn't giving me a break. We found a new tumor in my left arm last week, so my Oncologist has decided to stop the watch and wait and proceed with chemo on Tuesday. She wants me to do Rituxan once a week until Feb 1st and then rescan. If the tumor in my chest(4cm) cheek(1cm) and arm(2cm) have not shrunk enough to her liking, she will start me on Bendamustin(sp?) with Rituxan..(BR) in February. I'm not concerned about doing the Rituxan, just a little anxious about my infusions being weekly. I did one infusion every two months for 2 years and did fine, but don't know what to expect getting it on a weekly basis. Guess I'll find out soon enough.Surprised Take care and keep the faith.

Much love...Sue

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

Sue, praying for healing for you. When I was on r-abvd, it was every other week. Not sure how the R would have been alone. Stay strong and take one day at a time!! Thinking about you often when I'm out fishing. Jeff

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

Sue, I am so sorry that your Lymphoma is rearing it's ugly head again. But at the same time, I am so thankful that we have the options we have today for managing it. I hope you can just jump back on Ritluxan for a while and that will be enough. 

You have been so kind and giving to so many people here. I know there are members that have been through Bendamustine treatment so I hope you will be supported by some of them if it turns out you need it. 

I will be getting my last Rituxan maintenance in February, after having it 8 times with R-CHOP and almost two years of, like you, every 2 months for 2 years for maintenance. Then I will be scanned for the first time in 2 years! I will be having my first case of "Scanxiety" at that time, I'm sure. 

If I am not mistaken, you were not totally comfortable with the watch and wait protocol and at least now you will be taking some action. I hope that brings you comfort. Other than feeling anxious and overwhelmed, I hope you feel physically OK. Not having pain or B-symptoms? You sure look like you are doing well--your new photo is just beautiful! You are a lovely lady in more ways than one.  

(((Hugs)))

Rocquie

 

Anonymous user (not verified)

its nice to hear you are enjoying life on the river. Bummer about the lumps. We are both in similar situations. My scan in November showed the same small nodes in my mesentary and during my physical the doctor found a small node in my neck. The same rash I had on my legs before diagnosis is also back. We are watching and waiting till April. If either node is larger or new ones are found in that scan then I will have to enter treatment again. April 6 will be 1 year since my last of 26 R infusions. I think we will both be ok.i actually feel the best I have in years.

i started off my treatment with 8 consecutive weekly infusions of R. You will find it a cakewalk compared to the chemo you endured.

all my best wishes to you.

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

Thank you, Jeff, Rocquie and GKH,

  Jeff....My hubby does winter steelhead fishing above John Day Dam on the Columbia River, but it's too darn cold for me.Surprised I'll hold out  and stay home until the spring salmon run in April. Thanks for thinking of me! Smile Sue

Rocquie...Thank you for the sweet compliment.My Granddaughter was here the week before Christmas and wanted a new picture of me, so since I had my makeup on I agreed to it and then decided it was time to update my profile picture. More often than not I am clean faced with little makeup on.To answer your question...no,my cancer has not turned aggressive, nor changed grade or type. However,the new tumor in my left arm is pressing on a nerve causing discomfort and considerable pain in my middle,ring and little fingers. New tumor is located right above the left elbow in a pocket of lymph nodes that filter blood to the hand. I think it's called Suprachoclear Nodes in the elbow area. Yes, I will be glad to stop "watchful waiting" and finally get busy attacking the area's harboring these darn tumors. Gives me the creeps knowing I have a 4cm tumor in my chest, 1cm tumor in my cheek, and now this new tumor,and so far all we've been doing is sitting back watching them grow since April. Watchful waiting isn't working for me anymore. I  just want to hit it hard, knock it back and get on with life. Hopefully,4 weeks of Rituxan will do the trick, but we will have to wait and see. So glad your about done with the R maint. I finished mine Feb 22, 2012. Felt soooo good! I'll be praying for good clean scans after your done. SmileSue

GKH...Thanks for sharing you had 8 consecutive weekly infusions of R and did just fine.That eases my mind. I had no problem with every other month infusions,(for 24 months) so I'm thinking this will also go well for me. I'm just disappointed I only had 14 months clean of tumors after my R maint was finished. The fact it came back in my eye, cheek and chest so soon, has left me leary about my expectations of clean time versus what will really be. Well...we just have to live in the day and be grateful for what we have and just keep on keepin on. I'll be giving it my best shot. You take care and I'll keep you in my prayers for no new or enlarged nodes. Fingers crossed for clean scan results in April. Smile Sue  

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Sue,

Sorry about the proverbial "bump in the road."  I hope they can be eliminated with these more aggressive drugs.  Your new pic is very nice.

A blessed season to you,

max

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

Hi Max,

 Thank you...makeup can do wonders! Wink ha! Yes...I'm praying 4 treatments of Rituxan in January will be all it takes to shrink my tumors, but if I have to do the other chemo in February, Bendimustin(sp?)...then I will, and be grateful to have it. Hope things are going well with you. I'll keep you posted on how things go. Best wishes...Sue

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

 

Sue,

Here is the fact sheet on Bendamustine.  Side-effects seem pretty typical of most chemos: fatigue, nausea, a few other possibilities. It does not list some of the nastier effects of a few of the harshest drugs, like heart damage or lung fibrosis, which is great, obviously. 

It also does not list neuropathy, so if you end up taking it, hopefully it will not be too bad. 

I never had nausea in six months of infusions, so that is not much to be concerned about.  As to my severe fatigue, I had a solution: Sleep a lot ! 

Counting down to January 28 and the prostetctomy.

max

http://chemocare.com/chemotherapy/drug-info/bendamustine.aspx#.VKG8uB0MeA

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illead's picture
illead
Posts: 847
Joined: Aug 2012

I was so sorry to hear your bad news.  I know it will be okay but I am thinking about what you have been going through.  Ever since Bill relapsed, every little thing gets me worried.  I can't imagine knowing you have it again and waiting.  You must be a wreck.  You are always so upbuilding and stoic, but I know that behind closed doors, you have been suffering.  I hope the rituxan will do the trick, but if you have to have the bendamustine, it should be pretty easy on you.  Think you remember that Bill was on it.  The only side effect he seemed to have was that around the 4th day after the infusion, he would be a little extra tired for about 3 days, and as his treatments went on, he would get a little more tired.  It doesn't attack the hair follicles, so you won't even lose your hair.  He felt fine the whole time he was on Benda/rit.  He's a pretty strong guy tho, but I kind of think you are too (girl tho) SmileHis onc told us awhile back that they are using bendamustine more and more for lymphoma, so it sounds like you are on the right track.  Hope all goes well tomorrow, know it is nerve rattling to have to face this all over again.

You are in my thoughts, take care, 

Becky

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Sue,

Merry Christmas to you too! I had a good one with my kids and friends! I haven't been on here for a while but I wanted to check up on my old friends! I will be praying for you and I know you will be ok! I had Rituxan every week for four weeks every six months for two yrs. The first four were easy but like you know the medicine does accumulate in your body and you will start feeling tired, but nothing that you can't handle. Hope you don't have any problems with it..

I haven't seen an oncologist since May because I changed insurance companies and my new Dr. is lacking that motivation to get things moving haha! I will give her a call and remind her that I need those referrals! I don't want to stress about it or start thinking negative, I feel fine right now :D

take care of yourself (((Hugs)))

Sincerely,

Liz

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

Hi Becky and Liz,

 Thank you both for your sweet words. My chemo was cancelled today due to a cough and chest congestion I've been dealing with since Friday. We went home last week to see the kids for Christmas and after we got back to the river we heard a couple of them came down sick with similar symptoms, so until this clears up my Oncologist does not want me to get my infusions. I'm scheduled again for Rituxan next Tuesday, so I'm hoping this crud will be gone by then. I'm waiting on a call from my PCP to see if she wants to check me out,or let this run it's course. It's not like a cold...just a dry hacking cough and clear drippy nose that runs down my throat.(Yuk) Feels more like allergies to me, but I don't usually have any winter allergy problems. Anyways....I hope you both have a wonderful New Year. We will be home as always on New Years eve...not our thing to go our partying now that we are old. ha! Take care...Much Love...Sue

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Sue,

I sure understand about not wanting to go out much due to age-related issued. Of course, staying home is safer and healthier anyway.

It happens to everyone. A classic hit that nails it. Except for Hank Jr., Kris Kristofferson and Willie, everyone in this group of amazing talent and platinum albums has passed on.  A little lite fare to make you feel good about staying home !

max

https://www.youtube.com/watch?v=lD9ozx1-oT0

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

My prayers are with you sue. I am almost done with Rituxin and Bendamustine. It hasn't been as good to me as others in the side effect area,but after a full week I get back on my feet and feel a lot better. 

Keep strong and know that you can get threw this. It's obvious that you are strong and will and can still be cancer free. 

Much hugs!

~GG~

 

NANCYL1
Posts: 289
Joined: Jun 2012

Hello Sue:

I am not keeping up very well with the board.  I am sorry to hear that you are facing problems again, and hope they disappear quickly.

I have had good luck with Rituxin.  Side effects were not bad:  some tiredness.  Have a new oncologist.  Miss the old one.  Had Rituxin for about 2 years.  Finished: December 2013.   Rituxin:  every 6 months for 4 consecutive weeks, once a week.  Do not know about the other chemo. that  you might have.  

I hope that all goes very well for you.

Nancy

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Sorry for the delay in response but I'm just now catching up on posts.  I'm so sorry you're having to battle the beast again. 

I'm sure you will do fine with the new treatments and wish you the best for quick recovery and minimal side effects.  You're such a strong, wonderful and sweet lady!   You know we're here.

Big warm hugs,

Jim

 

JoaniePP's picture
JoaniePP
Posts: 10
Joined: Feb 2015

Hi   It has been a long time but I always remember your positive posts.  Hope you are doing fine.  It will be 6 years in remission this June.  I feel blessed every minute. Joanie

JoaniePP's picture
JoaniePP
Posts: 10
Joined: Feb 2015

Hi Sue,  It has been a long time, but I still remember your first picture with long blond hair and you catching fish.  I pray that things go well for you in February.  Joanie

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