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Shortness of breath, Single agent Rituxan

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I have been dealing with shortness of breath since my treatment in 2014.  I have been seen by cardiology, wore a halter monitor, mutilple stress tests and thankfully my heart is good.  Next a pulmonologist and many more tests and scans.  Nothing remarkable.  Ok, thoracics they will find something.  Tests, tears, tests.....  Small things found  but nothing warranting my symptoms.

Last week a new CT scan.  I will get the results Tuesday, confident they will not find transformation or nonsense from the lymphoma camp.  At least I hope not and I doubt it.

What scares me most is that I'm in a rare and twisted rituxan world that exists but few are in.  Regrettably it's not just me.  They don't know what to do with me, keep checking for lymphoma activity but thankfully it has always come back negative.

Two years later and nothing is better in my breathing and shortness of breath.  It's not stress to my knowledge although I've had a bit.   

Any thoughts are welcome, perhaps someone knows something I don't.  My symptoms are less frequent but sometimes worse.  I should also note I never had any problems before.

Thank you in advance.

OO7 

Anonymous user (not verified)

My biggest issues with my long Rituxan regimen were fatigue, muscle  pain and joint pain. Also my fingernails got weird. That all went away within a few months of completing the treatment. I could never get any of my medical team to admit or even discuss the possibility these symptoms were caused by R. They just wouldn't go there. I guess there was nothing to be done even if it was R because it definitely stopped the lymphoma, at least temporarily, so stopping treatment was not an option.They made it very clear to me that the odds strongly favored a recurrence at some point - maybe months, maybe years away. As for the shortness of breath, could it be that was just a symptom of fatigue?

Stay calm, return fire.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I too have extreme fatigue but I don't see an association.  I can be resting and it comes on, exerting myself strenuously and I can kill it temporarily and then breath fine.  Well as one normally would after pushing themselves hard.  It's definitely cellular, just like my fatigue and perhaps you know what I mean by that.  

Thorasics put me through a crazy test measuring my heart and lungs while on a bike cycling hard and increasing the incline and tension.  It was hard but performed far better than anyone expected.  I felt like a circus act, doctors and technicians looking at me as if I was bionic and not cancerous.

I did not do Rituxan long term.  In fact I had to discontinue after my counts fell so low.  I received a great result for the lymphoma but I'm different and it's debilitating for me at times.  Trust me I'm not complaining, it is what it is but I need to keep all this under the radar for I'm protecting my mother.

Like you doctors didn't want to make an association to Rituximab.  I told them this wasn't rocket science, it wasn't there before the Rituxan and now it is.  December 2014 was my last infusion.  They believe me but admit they don't know how to fix it.  Hence the new doctor and scan.  He did tell me it would be rare for this not to come back for me but confident he can get me through it.  Argh.  All I care about is protecting my mother, so this demand better not show its ugly face and mess with my hair because not so sure I can hide that from her then.  I find out tomorrow what was on the scan if anything.

Thank you for your response, trust me I plan to return fire and a whole lot more!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

007,

Sorry about the continuing breathing issues. I have written so often on the topic of chemo-induced shortness of breath that I cannot bring myself to do it again. But it is easy enough to find in my history, if you care to look.

Very briefly:

While Rituxan does cause breathing issues in 10% to 29% of users, this effect is ordinarily immediate.  I have never read about long-term or delayed breathing issues traced to Rituxan.

Luckily, you are being tested in seeminly every possible way, so the doctors are very likely to identify the culprit.

After a few months on chemo I would at times have so little breath that I had to pant like a dog, and could not answer a telephone or stand up.

My pulmonogist determined that I have both asthma and fibrosis in both lungs. He believes the fibrosis was caused by severe reflux: Stomach gases so toxic that when I inhaled them, they burned the lung tissue.  Fibrosis, regardless of cause, is not fixable by any means in contemporary medicine.  Causal factors (when indentified)  can be removed to prevent further damage from occuring.  Respritory therapy can help, but is not curative of fibrosis. I currently use two inhalers, taking Symbicort twice daily for the asthma.

Who would have guessed regarding the reflux ?

max

Rituxan Fact Sheet:  http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

po18guy
Posts: 1011
Joined: Nov 2011

Max, have you had a Nissen Fundoplication? DW's reflux was so bad that they performed one on her. Reflux went away.

As to breathing, 007, have you undergone a lung function test? You would remember if you had. I have had the 'sensation' of shortness of breath, but lung capacity, peak flow and other parameters show nothing of concern. Right now, there is a change in my breathing pattern, in that I inhale, pause, exhale, pause, inhale..... It is no longer the slow taper at the end of inhalation and exhalation, but airflow stops abruptly, then changes flow. Just one more enigma to add to the stack. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

I have not had that proceedure, Po. In fact I am unfamiliar and have not had it mentioned to me by doctors. I'll look it up.

I have a severe hiatial hernia, so bad that people around me can hear the top of my stomach moving in and out of the hole in the diaphram; sort of like a rusty see-saw moving up and down. Thankfully the noise is infrequent.  I was "scoped" with an upper GI and had the escophagus "stretched" to aid in swallowing.  But the surgeon recommended against repair of the hernia, which I agreed with. He stated that the success of the proceedure is not very good. But he also noted that the hernia is why my reflux is so terrible.

My lung function tests have shown me with poor respiration, although my oxygenization is always high-normal.  I feel part of this is structural: after my chest was caved in 30 years ago and I got off of the ventillator, it was months before I could speak more than a few short words, and still today I can't speak loudly or yell.  The first six months I stuttered severely and at  times couldn't say anything.  My docs said I probably had organic brain damage and advised a neurologist, but I never went to one.   My voice now sounds like Ben Stein would sound after a few valiums.

.

po18guy
Posts: 1011
Joined: Nov 2011

Simply put, the Nissen fundoplication is where the top of the stomach is stretched around the sphincter at the bottom of the esophagus and stitched in place. It tightens the sphincter and prevents reflux. It is done laproscopically. DW has Barrett's syndrome, which is a pre-cancerous change in the cells of the esophagus due to the chronic reflux.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Indeed, several in fact.  

I also wore a holter montitor, two stress test for cardiology. A metabolic stress test and a series of tests for rare forms of asthma.  I received several gold stars for those but no answers.  

Enigmas we are, an entire lovely lot of us!

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Thank you Max, I have read your previous post and it's exhausting looking for answeres.  Especially when I don't fit into a box.  Single agent Rituximab, long term, nothing showing up on radar.......  I'm beginning to think this is just the new me.  I'm  supposed to travel and see a new pulmonologist but I really don't want to.  I have seen many good doctors and personally don't think I have it in me anymore.  It's not life threatening so perhaps I just need to accept it.

I do have nodules and fibrosis but small in size and don't think it warrants much.

 

Refux???  What the heck do you eat??? Kidding!!!!

Nasty stuff.  I just took my daughter in for an endoscopy to see if there was any destruction to her esophagus due to her reflux.

Take care,

OO7

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

As I mentioned to Po, I have been endoscopied. Remarkably, I had no stomach damage or erosions in the escophagus.

Like you, I am tired of doctors.  I have had numerous abdominal surgeries, the worst of which was gall bladder removal, prostate removal, and then hernia repair of the incision above the naval where the prostate was pulled out. So, three major surgeries in the area of the navel. Now my hernia repair has apparantly re-prolapsed/herniated.  I see the surgeon on Oct 11, but unless there is compelling reason to do so, I am not going to have him dig through scar tissue for a fourth surgery.  I feel like I've been beaten for a week with a 2x4.  (What I was actually beaten with was a Pontiac.)

But thankful to continue on,

max

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

You, all of us need a break!  We should ALL plan something special for this weekend. 

Blessing coming your way...

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

Posting this here because it pertained to respriatory issues.

I went to my family doc yesterday for something unrelated to cancer.

Routine check of my oxygenization showed my O2 at 87%.  They knew I go to a lung doc, and recommended I call him today. His RN told me today to buy my own meter, and that she would run the results from yesterday by the doctor.  I did some online snooping, and disability guidlines authorize an O2 bottle at any value under 89%.

I have felt woozie, and will continue to check into this. I was severely anemic three years ago which can cause low O2, and went on IV iron for two weeks, but I don't think I am currently anemic.  My onc at that time was quite alarmed about the sudden anemia, but it went away and didn't return, cause unknown. He had me tested then for a lot of things, including a colonoscopy, all negative.

If you test low for oxygen look into your RBC values.

max

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Will do.  Oddly I've been quite well and don't want to stir the pot so to speak.  Three weeks ago I noticed my energy level returned.  Suddenly I wasn't walking slowly and lagged behind others they lagged behind me.  I do still get light headed and winded at times but not everyday.  On a trip across country I noticed major swelling in my legs which never happens (I travel a lot) but I walked the hills of San Francisco and was great otherwise.  It was like a switch went off and I returned to the closest version of my former self.  I was getting fervoish feeling everyday, winded, etc.....  now nothing remarkable to type.  I'll take it!!!!

Last year I couldn't push a broom, this year I'm planting hundreds of bulbs.  

Thank you for the information.  I know this won't last, it never does but happy for the break.

 

Please keep keep me posted.  I see my Onc on Monday but may cancel.....

Cocamoxb
Posts: 7
Joined: Nov 2016

007,

That is GREAT news! Congratulations and I hope your bulbs have MANY blooms!!!! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

007,

I've been given to edema (fluid retention in the legs) for a few years, but finally got checked, and discovering the cause was easy enough: My blood pressure med causes this in most users (Norvasc). My doc cut the dose in half, and the edema has mostly disappeared.

My swelling mostly occured in the evenings, and after prolonged sitting, as one would expect.

Like yours, my swelling was not continuous, but would come and go.  If you take BP meds it is worth asking about.  I glad about your newfound energy,

max

illead's picture
illead
Posts: 846
Joined: Aug 2012

I do not recall this ever being mentioned so just thought I would throw it out there, although I don't think it's your problem 007 since you have had all the tests.  Last year Bill had some minor surgery and his pre op ekg showed he has Afib.  He is being treated for that etc.  We just attributed it to the Ibrutinib (the target drug he is on for MCL)  About a month ago he called the specialty pharmacist in MI where his Ib comes from because of other side effects he is having.  He mentioned the Afib attributing it to Ib and the pharmacist said it was not a side effect of Ibrutinib but it is a side effect of Rituxan.  I have been meaning to say something but got busy.  Just another thing to be on the look out for I guess....Argh

Becky

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

As for the fluid retention thankfully I only had it 18 years ago while pregnant with my son.  I wore compression stockings and elevated my legs.  Soon they were better.  I don't take any BP meds.  Hope it was a weird fluke.  Honestly I was scared only because I recently saw a few doctors and routinely they checked my ankles.  So when they blew up I wondered what on earth were they looking for ???.  Two doctors are my oncologists and the other is a new Pulmonologist.  All seems fine now.

* Becky, you may be on to something.   I do have a cardiologist.   I've had two stress tests, I wore Holter monitor, I even had some crazy stress test that is more extensive through a thoracic surgeon.  

 

Every test I do seems to come back good yet I do have occasional chest pains, fluttering, shortness of breath, dizzy spells  and this all started with my first infusion of Benadryl, steroid and rituxin.  I didn't have it before and I have it now.

 

Two weeks ago my best friend is an oncologist and she was reading a study that she forwarded to me, it's about the heart and   The effects from certain drugs used.  Not the same  drugs but similar.  In this new study it showed newly discovered problems with the heart and she urged me to see an oncology cardiologist.

 

We shall see.

 

 Happy Thanksgiving all, have a wonderful peaceful day with many blessings.

 

PS.   Please excuse the typos for this is done on my phone!

lindary's picture
lindary
Posts: 663
Joined: Mar 2015

I have problems with edema that comes from poor circulation. In 2014 it was found I had insufficient veins which were treated, before the cancer was found. That helped but I also have to make sure I keep walking as much as I can. Any sock wear the top of it is near the lower part of the leg can cause my legs to swell. Knee high ones seem to be ok. Now I have a knee support for my left leg to get the bones in alignment and reduce the problems I was having. Prolbem is if I wear knee high socks the knee support slides down my leg. So I have to wear the shorter socks so the support is not on the sock but it causes my leg to swell by the sock. Tlak about a catch 22!

yesyes2
Posts: 590
Joined: Jul 2009

I too have had a long history of edem due to poor circulation and vein insufficency.  Unless I wear compression garments my legs will swell.  I am lucky that they reduce every evening though.  My entire body leans toward Lymphodema.  Any trauma, surgery, over use will result in swelling.  Research is now thinking that Lymphodema min some may infact be an auto-immune disease.

Linary, I was wondering what procedure you had to treat your vein insufficency?  Love that you hair is now long enough to style.  Looking forward to seeing your lovely face with newly grown hair.

lindary's picture
lindary
Posts: 663
Joined: Mar 2015

They did the vein ablation. The prep was longer than the actual procedure. It was simple and I was back to work the next day. Before I had ti done it was getting hard to walk any distance. I wasn't tired but my legs felt like they weighed a ton!  Within days of the procedure I felt better. They did the second leg about 2 weeks after the first. It ended up being about 2 1/2 weeks before I was told I had cancer. I can't imagine how I would have gotten through all of the cancer stuff if I could hardly walk. 

 

Lauraisabel
Posts: 43
Joined: Jun 2017

Had my spleen taken out and have been on w/w since. All of a sudden my red blood cells dropped very quickly to the point that I was told I needed a blood transfusion. I have had this cough and feel so tired. Am taking 70 mg of prednisone right now, and was told I need a bonemarrow biopy and rituxin ed infusion....I am very nervous....does anyone know more about this....thank you.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I see you were diagnosed in 2001 with marginal low grade b lymphoma.  I have follicular NHL stage IV grade 2 and was treated with signal agent rituxin.  In 2014 and today I'm in remission.  Rituxan is a monoclonal antiboby which targets the cancer and does quite well fighting the beast.  There are little side effects with this drug and most do quite well.  As for a bone marrow biopsy I had one, not as horrible as I expected.  My close friend was my Oncologist at the time and he talked me into having one on my very first oncology appointment, I had no warning.  Perhaps that was a good thing.  He told me it was like going to a dentist.  When he was done, I asked him who his dentist was!  We laughed and I went home.  I was a bit sore but fine.

I hope this helped, hang in there and good luck.

ShadyGuy
Posts: 428
Joined: Jan 2017

what type of NHL were you diagnosed with? What is "W/W"? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

I am GUESSING, but I suspect that w/w is "Watchful Waiting" -- same as active survellance.

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