What to expect post-reatment- Rituxan/Bendamustine

lindary

maintenance

I know I call it Spa day but the worse part of me is the time with restless leg syndrome. It is from the high dose Benadryl and all I do is walk or pace because I can't sit still. Once the Rituxan drip starts the restless leg thing stops. Will it come back.  Some Dr. say yes. Some say you will more likely die of something else than FNHL. I have also read that some oncology groups that deal with blood cancers are looking at what point to maybe say a person is cured because their "remission" time has been very long. 

When it comes to cancer, especially the blood cancers, we are living in interesting times. 

Marilyn75

KarenSMZL said:

3 treatments of Rituxan/Bendamustine

I have only been diagnosed since May so we are pretty neck and neck.  I feel the worst on day 3-5 after treatment as well, and then feel really good the rest of the month.  I did not know how fatigued I was prior to treatment and I am experiencing an increase in energy so I take long walks with my daughters and sometimes the grandchildren.  I am 54 and have 4 grown children and 4 beautiful grandkids.  I didn't even think about whether or not I should get my hair colored and I have to admit that I have.  I have always eaten a pretty healthy diet but the one thing I have changed is to decrease the red meat in my diet. I have been lucky enough to not need Neulasta yet, but my sister in law told me that Claritin really helps with bone pain.  I also saw that MD Anderson actually is doing a clinical trial to see if it works.  I agree that the mental part of all this is the hardest.  Trying to stay positive and not get mired down in the "what ifs" of the future is hard.  I try to love a little more, laugh a little more, and savor life a little more, and to remember to thank God for every day I have. 

I have had my 5 treatment of the combination. Up till this month, the 5trmt, side effects are getting worse. Had treatment 2/3 of Sept. This last week feeling really bad. Sweats, nausea, worse weakness, had 2 falls, one required 40 stitches. My skin is really thin and splits easily. Is bendamustine cumulative? Has anyone else had these extreme side effects

NailsJHS

PBL said:

Post-chemo follow-up etc.

Hello again NailsJHS,

Thanks for your kind words. I can relate to your need to preserve your peace of mind - although I researched quite a lot on lymphoma, treatments, etc., I didn't even consider posting on forums until the very end of my treatment...

You must have had your results by now. I hope your prayers have been heard and that the news is good.

As for me, I had the first of my consolidation Rituxan treatments mid-August; the second will be in October, and so on every eight weeks for two years. I see the hematologist every time I'm in hospital for treatment.

With respect to follow-up, she told me that I would be having a CT scan in a year, which surprised me a little - but then the initial plan to monitor my treatment had been MRIs, and that was completed with PET scans when the MRI proved to be useless in showing any change in my bone lesions... At any rate, from what I've read it is more likely for relapse to be detected through the patient coming back with a new symptom than through systematic imaging, so I guess there's no point worrying about that.

My lashes and eyebrows started growing back shortly after the end of chemotherapy, so that I now look like a normal person with an extremely short haircut. The hair is still very fine, not really like my "usual" hair, but at least it covers all of my scalp (and a lot sooner than I'd been given to expect), so I won't complain. I guess I will some day find that it is back to normal. In the meantime, I no longer need to wear a scarf, which is pleasant enough. The first layer was all white, but the black is gradually coming out. I was gray before all this and had never used any dye, so even though the shade is paler now, it's not much of a shock.

Taste and smell are more or less back to normal now, and I am working on cutting back on sugar and reverting to my usual staple of mostly vegetables, fruit and fish.

I lost quite a bit of weight over the past year, and the treatment itself hit me pretty hard, so Doctor's orders are now to regain some muscle strength through gentle and relaxing activity such as yoga, Pilates, and swimming. So I went swimming (didn't do much actually...), came out of the water limping, and took a week to recover. This week I'll try a special yoga class through the hospital to see if that's any better. I am going out pretty much every day and making some slow progress, but at this point I find that I've reached my limit without any form of advance notice, and then I'm in pain and limping hard again, so I imagine the road to recovery will still be quite long.

Looking forward to reading your next message, and hoping to rejoice over some good news!

No evidence of cancer!

Hello PBL, 

I apologize for the VERY tardy reply. I find myself sometimes unable to get on the boards because i just want to avoid all things 'cancer'. Anyway, the PET I had after 4 treatments showed no evidence of cancer anywhere (previously it was in the bonemarrow of my him, and some spots in my shoulder and pelvic bone) so...I AM THRILLED! It also showed that my bone wa starting to rebuild itself which is amazing also.  I then did two more chemo/immuno treatments and go back for another PET and CT in early November. I will have no med or any kind of treatment going forward unless I get a reoccurrance.  I believe i will come back in the spring for another PET/CT, but that should be it. 

I went to see an Integrated Medicine Doc at MSK and am taking three supplements that I think have helped me tremendously maintain my immune system and health in general. My oncologist always says that you'd never know I had chemo if you looked at my blood results and I credit these supplements for at least part of that. 

My taste buds haven't recouped just yet and I amvery sensitive to smells, but other than that I can't really complain. I plan on spending a lot of time in the coming weeks doing research on all ways I can avoid exposure to chemicals in my life (through cleaning products, food, water, make up, hair color, pesiticides, fertilizer...whatever!).

Best of luck to you and please do let me know how you are doing soon. 

 

 

 

PBL

NailsJHS said:

No evidence of cancer!

Hello PBL, 

I apologize for the VERY tardy reply. I find myself sometimes unable to get on the boards because i just want to avoid all things 'cancer'. Anyway, the PET I had after 4 treatments showed no evidence of cancer anywhere (previously it was in the bonemarrow of my him, and some spots in my shoulder and pelvic bone) so...I AM THRILLED! It also showed that my bone wa starting to rebuild itself which is amazing also.  I then did two more chemo/immuno treatments and go back for another PET and CT in early November. I will have no med or any kind of treatment going forward unless I get a reoccurrance.  I believe i will come back in the spring for another PET/CT, but that should be it. 

I went to see an Integrated Medicine Doc at MSK and am taking three supplements that I think have helped me tremendously maintain my immune system and health in general. My oncologist always says that you'd never know I had chemo if you looked at my blood results and I credit these supplements for at least part of that. 

My taste buds haven't recouped just yet and I amvery sensitive to smells, but other than that I can't really complain. I plan on spending a lot of time in the coming weeks doing research on all ways I can avoid exposure to chemicals in my life (through cleaning products, food, water, make up, hair color, pesiticides, fertilizer...whatever!).

Best of luck to you and please do let me know how you are doing soon. 

 

 

 

Wow! Congratulations!

Hello NailsJHS,

I am impressed with your latest news, and, needless to say, very happy for you. It is fantastic news indeed! You seem well on your way to a speedy recovery.   I would love to know what those great supplements you mention can be, if you'll share the secret...

As for me, I am making some slow progress, but still limping despite physiotherapy. I had expected my bloodwork to be back to its pristine pre-chemo normal three months after my last treatment, but liver enzymes have continued to climb, and were at five times the upper limit when I was last in hospital two weeks ago. I had a liver sonogram this week, which was deemed unremarkable. I don't know what's next for me - I guess I will find that out next time I'm in hospital, in early December.

Take care and keep up the good work.

Hoping to get some more good news from you,

PBL

 

Unknown

I had restless leg syndrome the entire 2 1/2 years I was on R. Your experience is interesting because I never even thought it could be the Benadryl I got in the drip every infusion. Hmmmmmmm ! This requires further investigation. Thank you for bringing it up. I fly a lot and just hate it when I have restless leg on a long trip.

NailsJHS

It's definitely the Benadryl

Hi GKH, 

Just wanted to chime in that the Benadryl is most DEFINITELY causing yoru restless legs.  I mentioned this to my doctor and she switched me to another med that did not cause it (sorry can't remember the name, but will post if I remember).  Also, I've heard from several people that a claritan pill can also relieve restless leg. It's worth a try!  Good Luck!

NailsJHS

Slowery said:

Post Treatment

I just finished my treatment early last month. The last two were the worst, a lot of nausea and fever, but I also had a UTI and upper respiratory trace infection at the same time. After my family dr. gave me an antibiotic I felt fantastic after a week - 10 days. I start my "maintenance" next week. I have that for 2 years. I almost thought about not receiving the maintenance since I don't want to ever go through that fatigue again. I have Stage 4 Non-Hodgkin Follicular Lymphoma. From what I see on websites, this cancer seems pretty managable. I just want to find out what kind of time I can expect to survive. My doctor says that the chance of it returning is 100%. Any thoughts??

Post Treatment thoughts

Slowery, Hang in there!  I too have Non-Hodgkiins Follicular and it is also what they call "indolent".  This means that it technically won't ever completely go away, BUT it can lie dormant for years and decades which is what I'm choosing for myself    There is no way of anyone, including your doctor, knowing how long you have to survive.  Just take one day at a time and pray that if it ever does return that by then there are new meds and new discoveries made that can keep us healthy. 

donnee7

NailsJHS said:

Thanks for the reply! It's

Thanks for the reply! It's just so nice to "talk" with someone going through the exact same cancer and the exact same treatments (well pretty darn close!).First, I am so happy to hear that you're doing well 2 years out and that things have normalized somewhat.  I'm curious as to why I have 6 treatments and you only had 4. Also, I was told I wouldnt have to take anything after my 6 treatments unless the cancer returns.  The more I hear and read the more I realize how incredibly individually-specific each cancer is. Anyway, as you did...I will do whatever my doctors at Memorial Sloan Kettering tell me to do!

I have a bunch of random questions/comments for you:

• Re the hair coloring...UGH I don't know what to do with this one. I, like you, feel that the studies aren't conclusive, but I do truly believe I got this disease because of 'chemicals'.  I am currently using a rinse which basically covers the grays a little and washes out with each shampoo.  My nurse recommended this to me. This won't work long term but I'm going to try and stick with it until my treatments are done.  My question is, did you research or discuss with your stylist any highlighting or coloring that is better for us in someway? 
• Did you switch to any organic or healthier shampoos/conditioners, soaps, etc? I haven't done that yet but will look into doing so soon.  I am creating my own toothpaste with baking soda, water, salt, and peppermint drops. I highly recommend it as my teeth never felt cleaner or looked whiter! I also just found a totally natural deoderant that really works great. LMK if you want info on either. 
• As for food, I've completely cut out white sugar and otherwise am just trying to eat healthier. I am a pretty healthy eater as is, but making slightly better choices daily is my goal.  During treatment I kinda eat whatever I can stomach just because I want to retain my weight ,but afterward I will be stricter with myself. Although I can not wait to have a glass of wine!
• I also plan to exercise more.  Right now I just walk a few miles several days a week if I am not too fatigued.  Once the kids are back at school I hope to do this everyday. I also want to learn how to meditate. I'm not good at sitting still so this will be a challenge. 
• During treatment did you avoid germy places? I've been trying to lay low since my white blood cells are done due to the treatments and so far it's worked.  During my good week (the week before a treatment) I usually go out a bit more, but otherwise I've been trying hard not to expose myself. 
• Did you loose some hair during treatment? I know I am incredibly lucky not to be losing all my hair, but I am losing a lot of it after each shampoo. Just wondering if you also experienced this and if it stopped after treatment.
• Finally....my allergies have been terrible!  This summer has been very hot and rainy so outdoor molds which is what I'm allergic too have been very high.  They are telling me that since my immune system is compromised my body is having trouble fighting the allergies. They are letting me take Zyrtec which helps but not completely. Did you experience this at all?

I'm sure there are a million other questions I could ask you but that's all I can think of for now. Hope you don't mind the lengthy reply!  All the best to you!

NHL

I am done with the 6 months of B & R infusions, Thank God.  Chemo is a great weight loss treatment.  I too have hair loss but not until after all my chemo, then it started falling out like mad.  I do not color my hair, and have very little grey which at 69 I am glad.  For my allegeris, I use bee pollen from a local bee keeper with honey from them also.  Bee pollen is a natural way to get rid of the allegeries, as the bees are pollinating what we are allegeric to.  You have to start out SMALL- 1/8 tsp which is about 2 or 3 kernals or pollen, then work your way up.  Take the 1/8 tsp for a week and then add another 1/8 to make it 1/4 and so on.  Once you notice that your allegeries are gone, just keep that does every day.  My doctor said that there was no problem with the pollen and my treatment, but do check with your doctor.  Also, the pollen and honey need to be within a 50 mile radius of where you live, so do not purchase it at a health food store, as that will not work for your local allergies.

I am waiting for my pet scan to see if the remission is real, and then I am having this port removed.  My treatments laid me out for about a week, and then I got better every day.  Doing it once a month for 2 day's made it easier.  That being said, being poisoned is not easy to take no matter what the cause for the chemo. 

Check into the Roundup website as NHL and HL are both side affects from Roundup, so if you used it in your garden, you might qualify for some compensation.

There are a bunch of other cancers that Roundup caused, but those are the fist two.

Please someone tell me that I will grow my hair back, I can see my scalp in the front and I am not liking this look.

 

ali_m

NailsJHS said:

Thanks for the reply! It's

Thanks for the reply! It's just so nice to "talk" with someone going through the exact same cancer and the exact same treatments (well pretty darn close!).First, I am so happy to hear that you're doing well 2 years out and that things have normalized somewhat.  I'm curious as to why I have 6 treatments and you only had 4. Also, I was told I wouldnt have to take anything after my 6 treatments unless the cancer returns.  The more I hear and read the more I realize how incredibly individually-specific each cancer is. Anyway, as you did...I will do whatever my doctors at Memorial Sloan Kettering tell me to do!

I have a bunch of random questions/comments for you:

• Re the hair coloring...UGH I don't know what to do with this one. I, like you, feel that the studies aren't conclusive, but I do truly believe I got this disease because of 'chemicals'.  I am currently using a rinse which basically covers the grays a little and washes out with each shampoo.  My nurse recommended this to me. This won't work long term but I'm going to try and stick with it until my treatments are done.  My question is, did you research or discuss with your stylist any highlighting or coloring that is better for us in someway? 
• Did you switch to any organic or healthier shampoos/conditioners, soaps, etc? I haven't done that yet but will look into doing so soon.  I am creating my own toothpaste with baking soda, water, salt, and peppermint drops. I highly recommend it as my teeth never felt cleaner or looked whiter! I also just found a totally natural deoderant that really works great. LMK if you want info on either. 
• As for food, I've completely cut out white sugar and otherwise am just trying to eat healthier. I am a pretty healthy eater as is, but making slightly better choices daily is my goal.  During treatment I kinda eat whatever I can stomach just because I want to retain my weight ,but afterward I will be stricter with myself. Although I can not wait to have a glass of wine!
• I also plan to exercise more.  Right now I just walk a few miles several days a week if I am not too fatigued.  Once the kids are back at school I hope to do this everyday. I also want to learn how to meditate. I'm not good at sitting still so this will be a challenge. 
• During treatment did you avoid germy places? I've been trying to lay low since my white blood cells are done due to the treatments and so far it's worked.  During my good week (the week before a treatment) I usually go out a bit more, but otherwise I've been trying hard not to expose myself. 
• Did you loose some hair during treatment? I know I am incredibly lucky not to be losing all my hair, but I am losing a lot of it after each shampoo. Just wondering if you also experienced this and if it stopped after treatment.
• Finally....my allergies have been terrible!  This summer has been very hot and rainy so outdoor molds which is what I'm allergic too have been very high.  They are telling me that since my immune system is compromised my body is having trouble fighting the allergies. They are letting me take Zyrtec which helps but not completely. Did you experience this at all?

I'm sure there are a million other questions I could ask you but that's all I can think of for now. Hope you don't mind the lengthy reply!  All the best to you!

fnhl after treatment

Hello

I wish I had looked for this board earlier. I was diagnosed April 2016 at the age of 47. Married, working Mom of 2 teenagers. Felt like I was the only person like me going through this. Completed 6 cycles Bendamustine Ritxan in November. Partial remission. Now on 2 years of Rituxan maintenance every 3 months. 

My onc fellow told me that there are no know reccomendations on nutrition for fnhl - just eat healthy. I was avoiding red meat, fried food, alcohol, etc. Fatigue increased every cycle and I suffered from constipation throughout. Hair thinned, but not noticeably. I was able to work throughout, but at reduced capacity. My firm has been very supportive - even just promoted me!

I raely take public transit, wore a mask on flights during chemo, hand sanitize repeatedly and lysol my desk at the office every morning (we hotel - shared spaces). I was very fortunate to not catch a cold during treatment.

During treatment, I just focused on getting through. Post-chemo, I started to face the reality of my situation and feel the emotions I had been suppressing. Finally got some help - met with social worker at the hospital a few times. She is fantastic! Now, I'm getting relaxation therapy and trying harder to make time for yoga. People talk about this diagnosis being a blessing, a life-changer. But, I loved my pre-cancer life! I am gradually adjusting to my new normal.

 

Hope you are all doing well - stable and strong!