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Follow Up on my Recurrence

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Hello friends,

I had a CT scan late last week and saw my hematologist/oncologist yesterday. Bottom line: my disease is stable and no treatment is needed at this time. I don't need to see the doctor again for six months (unless something changes). So, Yay!

In April, I had 3 minimally enlarged lymph nodes in my abdomen which doctor thought indicated my follicular lymphoma was relapsing, which it has a nasty little habit of doing. My newest report indicates that one of the nodes is the same, one has shrunk by half, and the other is nearly imperceptible. Doctor said it may not even be lymphoma but rather swollen nodes for another reason. Because of their location and the fact that I am asymptomatic, he doesn't think any further testing is clinically advisible at this time and I agree. 

The downside to my CT scan shows some scarring in my lungs, I have had some shortness of breath, though I have tried to ignore it. I have recently had some heart tests done and all are normal. He has referred me to a pulmonologist and I will update after that appointment.

Doctor did tell me that chemo could cause lung damage. He mentioned that he has another patient who had the same chemo as me and is now on oxygen all the time. Yikes. I asked the doctor what drugs could cause this. He said Rituxan can cause it, Cytoxin can cause it, and Neulasta can cause it!  News to me. 

Thank you for all the prayers and I hope everyone is feeling blessed right in this moment.

Hugs to all,

Rocquie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

Roc,

I'm delighted regarding the good news.  It has to be a relief.

If you have followed my comments regrading lung impairment over the last two years or so, you know what I have shared already. I have fought severe shortmess of breath since I began chemo in 2009.  For others who may be new, I'll do a thumbnail recap:  Bleomycin is the worst chemo regarding lung damage, but I do not think you received it (it is not in R-CHOP or EPOCH).  Rituxan has little association with long-term lung harm, so I would very much doubt a Rituxan causality.

Adriamycin (a drug in CHOP, EPOCH, and many other combinations -- one of the most common chemos in use) is strongly associated with shortness of breath, but due to heart damage, not the lungs. As you have apparantly had an Ejection Fraction test for heart damage, that would not be the cause (Ejection Fraction is tested via ultrasound ordianrily).  You specified that you had "recently had some heart tests." If you did not specifically have an ejection fraction calculation done, I would request one. It is the definitive determination for heart function.  It does NOT involve a stress test, etc.  But be aware: A "perfect" score of ejection fraction is 65%. The tech said I had "about 65%", and I thought that I was doomed !

I just spent three years with a pulmonologist, who discovered that I had developed fibrosis in the base of both lungs (loss of about 20% of both), undeterminable causality, but he believes it was from reflux, not chemo.  Fibrosis is incurable and essentially untreatable, except for the symptoms.  " Scarring" of lung tissue is the same thing as "fibrosis.". Fibrotic tissue becomes tough, and can no longer exchange gasses in and out of the blood.

My pulmonologist said there was no way to isolate the causality in my case.  He also discovered that I have non-allergic asthma, and an inhaler has had me breathing relatively normally since I began it (Symbicort, with a Proair emergency backup).

I hope that in your case the causality is more readily identifiable and treatable/curable.  But a pulmonologist is the obvious best next stop on your journey.  I wish I had been sent to one years earlier.   

I'm glad your journey is a journey now promising new hope, in the sense that the lymphoma scare seems to have passed for now, and hopefully forever,

max

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Hi Max, yes I have followed your problems with your shortness of breath. I'm happy that your pulmologist has you breathing better these days. Hopefully, mine will too.

Thanks for your reply,

Rocquie

 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

That is an answer to prayer!!! I'm sooooo glad to hear it. I can't add anything to the Master's (Max) analysis. Max you are a gift to us...Thanks

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

As always, thanks for your prayers and best wishes!

Rocquie

 

PeprmntPat55's picture
PeprmntPat55
Posts: 63
Joined: Aug 2016

Rocquie that is great news!  So happy to hear it and what an encouragement to others.  

Im feeling blessed just hearing your good news :-)

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

In the time I have been a member of this forum, I have been encouraged by so many others. It is what keeps me coming around. And I pray that I can encourage others.

Rocquie

 

illead's picture
illead
Posts: 860
Joined: Aug 2012

Hi Roquie.

Sorry I am late in writing.  I am so happy to hear your good news, what a relief that is for us.  Don't think you need that on your plate right now.  Hoping for a good report from the pulmonologist.

Thinking of you (always).

Becky

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

I think of you often as well. It is always good to hear from you and I keep "assuming" that all is well with Bill's Mantle Cell?  

Hugs,

Rocquie

 

paella's picture
paella
Posts: 81
Joined: Jun 2012

So glad to hear the postive news, Rocque...have you seen the pulmonologist?

Best, Paella

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

I have not seen the pulmologist yet. Still waiting for appointment. . .

And how are YOU? I hope your strength is returning from your SCT. 

Cheers,

Rocquie

 

paella's picture
paella
Posts: 81
Joined: Jun 2012

Doing good (some days better than others)- more later.  We're just leaving to take my husband for his colonoscopy.  Since he had prostate cancer back in '10 and was treated at City of Hope - that's where we're going for the colonoscopy.  Spending tonight at a motel near the hospital to avoid his having to be a passenger for 2 hours after having the prep-drink tomorrow at 5 AM.  Back late tomorrow.  Will try to write a bit by this coming weekend.

hugz -  Paella

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Good plan making the trip early. I don't think it could be done any other way. :-}  I look forward to hearing from you again. . .

Hugs,

Rocquie

 

illead's picture
illead
Posts: 860
Joined: Aug 2012

Thanks for your kind words Roquie.  Bill had his 6 mo CT scan today and will see the doc on Tues.  Will let you know what we find out but we're not expecting any surprises.  He is well and feeling good except for some side effects of the "miracle drug", mostly tired and stomach being upset.  Funny thing he can eat spicy and it seems to help.  We have a plethora of Mexican and Thai restaurants here, and the people, so no problem ; )

Hugs back, Becky

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I am glad the reports have come back with good news. It seems in this club even things that others would consider bad news (like shortness of breath) is good news for us. 

My next scans will be the begining of Nov. So I am going through the twitches & aches wondering if it is is back. I also wonder what kind of fall out I will encounter as the result of the treatment. I guess that is why I have occupied myself so much with work and family activites. My husband gets annoyed that I have had cookouts with our kids at least once a month.  It keeps my mind on more positive things. 

Kaniksu
Posts: 54
Joined: Nov 2015

we choose to look for and appreciate the good now don't we?..Stable, what a blessing for you.. great news to hear.

illead's picture
illead
Posts: 860
Joined: Aug 2012

Hi Roquie,    

     Just wanted you to know that Bill's CT was clear.  We are very thankful of course.  The doc prescribed a new med for his stomach side effect issue and it seems to be doing the trick.  We all just keep on keepin on.

Luv, Becky

abcma
Posts: 24
Joined: Aug 2006

I'm so glad that all is well!....Bev

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

Delighted to hear it, Becky.  For newbies who may not know, Bill is a first-line and relapse survivor of Mantle Cell, who declined stem cell transplantation for newer, less toxic drugs that have high success against MCL.  Wonderful to follow.  Becky has consulted with the world's leaders in MCL oncology.

max

illead's picture
illead
Posts: 860
Joined: Aug 2012

I too am so sorry about your cousin, it is very sad. You are so right though about the hope we have with lymphoma.  As you know when Bill was first diagnosed in 2011, it was pretty much a death sentence after relapse.  Now they are talking about a cure for MCL in 10 years or less.  So all of us patients and caregivers have a lot to be thankful for.  One of the foremost are the passionate doctors and researchers, and for each of us, we give each other strength.

Best wishes always,

Becky & Bill

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Hi Becky,

Thanks for the update on Bill. I'm so happy to hear that he is doing so well. I hope the new stomach med does the trick.

Big hugs to both,

Rocquie

 

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