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Husband being treated for follicular lymphoma

Ret4
Posts: 15
Joined: Aug 2017

Hello everyone. This is my first post here. My husband has been diagnosed with follicular lymphoma stage IV. His neck, arm pits, stomach, groin and bone marrow are all affected. His lymph nodes were not severely enlarged but his spleen is 21 cm. He lost 20 lbs being unable to eat much because of enlarged spleen. This was his only symptom other than mild fatigue.

He had his first round of chemotherapy (Rituxin and Bendamustine) 10 days ago. He was fine for the first 3 or 4 days but then began to run a fever ranging from 99.5 to 101. We have been in contact with our oncology team and I have brought him in to be checked twice. WBC is fine, no signs of infection. They did blood and urine cultures and a chest x-ray just to be on the safe side. All checks out OK but we're on day 6 of fevers although his temp has gone down to low grade now . Doc told him to take tylenol and keep hydrated and call immediately if needed. I was wondering if anyone else has had this reaction to this type of chemo?

Also he is having severe night sweats -- changing shirts 3 to 4 times a night. He never had one night sweat before treatment. Is this unusual? I know the fevers cause sweats but he's sweating even when his temp is down. 

Thank you so much for taking the time to read this. I'm a very concerned wife!

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Well I am sorry you have had to come here but you will find some loving folks. I finished 6 rounds of Chemo July 3. It was different chemo for a different type of Lymphoma. I had night sweats and unexplained fevers during some of my treatments as well. As long as the WBC stay up I never got real concerned. Just think the body has all kind of response to the Chemo. I did get the flu with my first treatment. So yes I ran a fever with that. I am sure others will chime in.

Please come often and ask as many questions as you need. It is not a fun journey but there are a lot of people on here who have made it and are doing great. I thought after 6 months of treatments I would never feel good again. Then slowly within about 5-6 weeks after treatment ended I started feeling better than I ever remember. Now I still have a journey to get my strength back but that is coming.

I am praying for your husband trusting he does well with his treatments. Remember staging in Lymphoma is not as big a deal as other cancers. There are many who have been stage 4 and I was 3B and many have had good results.

Sandy (I am 53 year old male)

Ret4
Posts: 15
Joined: Aug 2017

Sandy I can't thank you enough for your quick response! I'm sorry you had to deal with this too, but your post is such a comfort to me. My husband is 60 years old and other than the Lymphoma is in good shape. It's just terrible to watch him suffer. I'm going to pass your info along to him as well. Maybe I can even talk him into registering himself! 

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

i know thats easier said than done. I had stage 4 FNHL too. My spleen and liver were enlarged and bone marrow also. In my experience, B symptoms like night sweats can occur randomly And do not really mean much unless they happen regularly. About 1 year after my treatment ended I was on a road trip to Iowa to pick up my new camper. I woke up in the hotel totally drenched in sweat. I showered and went back to bed and the same thing happened a second time. I was shocked and depressed thinking I had relapsed. However I was checked out and everything was ok. Hopefully it will be the same for your husband!

Ret4
Posts: 15
Joined: Aug 2017

ShadyGuy thank you for your response. I'm so happy to hear your treatment was successful and you are OK! So glad I joined this group. Smile

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

Ret,

Sorry about your worry and your husband's sickness.  

Low grade fevers are common side-effects of numerous chemos. Fever is listed as "common" with Rituxan (> 30%), and "somewhat common" with Bendamustine (29-10% of all users).  I myself was on different drugs but was hospitalized the day after my first infusion for the weekend with low-grade fever, while I was tested for every bacterium known to medicine, all negative.  But low-grade fever is also a hallmark of some Lymphomas. So it is a challange to sort out for the staff; they just have to monitor him and ensure that his fevers not go too high, and rule out infections.

Night sweats are more associated with Hodgkins-type than NHL, but occur with both.  When they occur in NHL it is usually with the more indolent (slow-moving, non-aggressive) strains, like his Follicular.   Night sweats and weight loss are parts of what are known as B-Symptoms. Like most patients here, he is quite likely to recover and have a long and Lymphoma-free future.  This is very true even of advanced cases.

max

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

 

Ret4
Posts: 15
Joined: Aug 2017

Hello all. I've been meaning to get back here since my husband's treatment started last August. After 3 rounds of Rituxan/Bendamustine my husband's CT scan show great improvement. His spleen which had been severly enlarged was almost back to normal size and there was very little cancer activity pressent on his PET. We were so encouraged up until his blood tests done in Decenber. Things were pretty much OK except for his LDH level. This had always been on the low side of normal and suddently it had risen to 280. My husband was sick with a cold at the time so we were hoping this may be the cause, as our oncologist told us LDH was a marker for lymphoma so he was a bit concerned. My husband had his 6th (last hopefully) round of chemo the beginning of January but was unable to shake his cold and bad cough so the oncologist prescribed an antibiotic, sent him for a chest xray (clear) and blood work. They didn't give us any specifics on the blood work, just saying it was OK and to get his PET scan the beginning of February before his February 14th post chemo followup. I am able to view his blood work results online (MD Anderson) and was schocked to see his LDH had risen to 560. I haven't told my husband and have decided not to say anything until we see the doctor but I'm in a panic. Has anyone else had experience with LDH rising during treatment for follicular lymphoma? Thanks so much in advance for taking time to read this.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

First, Ret, it seems that overall your husband is making great progress. Focus on that.  PETs and CTs are much more authoratative in accessing cure than blood panels.

My LDH went way up late in my six months of r-abvd, I can't say why, although CTs showed the disease virtually eradicated at the time.  It is interesting also that when first diagnosed, with massive nodes everywhere from my lower neck to my pelvic region, my LDH was NORMAL.  Go figure.

His February appointment is not far away, even if it seems like an eternity at the moment.  If MD Anderson thought there was cause for a sooner appointment, they would call you and arrange it.   I see nothng improper in not sharing what you discovered online for now: he will know about it on the 14th, and get the doctor's assessment then.  No reason to frighten him over possibly nothing before then.

Ask about the result during the meeting. Not in a frantic way, and don't let it be the first thing out of your mouth when the doctors comes in, but do at some point during the meeting mention it and demand an explanation.   But be aware: many things in chemo and cancer cannot be explained, even by the best doctors in the world.

max

Ret4
Posts: 15
Joined: Aug 2017

Max, this is the first I've been able to breathe since I discovered his numbers. I can't thank you enough for putting my mind at ease. Also, I feel less guilty about not sharing what I found out with my husband right now. I will follow your advice and talk to the oncologist on the 14th in the course of the visit, not as soon as he comes in the door which of course is my first instinct! Thank you for thinking of that. Wink Yes, the 14th does seem an eternity away but I know it's not. Thank you again!!!

 

Sal0101's picture
Sal0101
Posts: 124
Joined: Sep 2015

Hi Ret4,

Last February I had some lung issues, was put on high dose Pednisone and had a terrible chest cold that wouldn’t go away. My LDH jumped into the 400’s for 5 months. I was scared to death that I once again relapsed! (DLBCL X2 and a autogolous stem cell transplant 2016 ) I didn’t, and once the cold went away and I went off the prednisone my LDH went back to normal.  I remember saying something about the high LDH to my pulmonologist and he said with lung issues he’s seen it in the 2000’s. I keep that comment in the back of my mind, but believe me, if it shoots up again I will again be worried of a relapse. 

Oh, and I don’t know anything about your husband and his condition, but if my husband kept anything from me and I found out I would have been livid, just saying. 

Sharon

Ret4
Posts: 15
Joined: Aug 2017

Sharon thank you so much for your input. I really appreciate you sharing your expierence with me! Yes, I do know what you mean about keeping this from my husband -- but he could check his numbers the same way I did and he chooses not to, so I guess he doesn't want to know yet. At least that is how I am rationalilzing it!Wink

Ret4
Posts: 15
Joined: Aug 2017

Hello all. I wanted to come by and say that despite my husand's rise in HDL level, the scan he had one week ago shows he is in complete remission! We saw the oncologist on Wednesday and he told us the wonderful news and we are over the moon!  He wants him to keep his chemo port for now (he had it flushed on Wednesay) and he will see him with blood work in three months.

All this is so wonderful and we were flying high until 1 AM Thursday morning when he woke up with fever of 101 with aches, chills and sweats. He called the onc in the morning who told him to to go his GP and be tested for influenza. That test was negative. At that point his temp was down and stayed that way all day so we thought it was over but by Friday AM his fever was back to 100.4. He called the onc again who said he is in remission and there is really nothing else for them to do at this point and if it persists to go to his GP for blood work etc. Last night he had severe night sweats (3 shirts) in spite of taking a fever reducer before bed. So far this morning his temp is back to normal and I'm hoping it stays that way.

I know there is a lot of illness going around this area these days but it seems so odd to me that his only symptom would be fever, chills and sweats. No congestion, no cold type symptoms, no cough. It has me worried even though I know his scan was only 1 week ago and he couldn't possibly relapse to the point of fever and sweats in such a short time, could he? I suppose I'm panicking for nothing but seeing him sick again after all he's been through breaks my heart. He didn't even have time to enjoy feeling good about his remission! 

Just wanted to get an opinion from the kind, experts here. Thanks so much in advance. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

Ret,

You asked for "expert" responses, but I'M going to reply anyway !

His fever and chills is almost certainly a flu or cold of some sort.  It is absolutely impossible for a Lymphoma to relapse from total NED ('No Evidence of Disease,' or 'Complete Remission') to the point that it yields significant side-effects in one week.  Absolutely impossible.

I have had some sort of flu going on three weeks now.  No congestion, but some dry cough, chills, low-grade fever. Muscle pain.  The flues this year are an atypical blend, which is why the vaccines did not work.   Your husband's symptoms are not Lymphoma, one week following a clean PET scan,

max

Ret4
Posts: 15
Joined: Aug 2017

Max, I wasn't sure anyone was going to respond and I've been out of my mind worrying. I can not thank you enough for taking the time to write. You have definitely put my mind at ease concerning relapse. 

Unfortunately my husbands fevers continue -- it will be 1 week tomorrow. Last night was highest yet at 102. He has been in touch with his oncologist's office and followed up again with his primary care physician as suggested yesterday who did chest xray (negative) and now we are waiting for results from blood work and urine. He gave him an antibiotic just in case. I can't imagine what's causing this, but relived that it's not the lymphoma. 

Thank you again!!!

 

po18guy
Posts: 989
Joined: Nov 2011

Your husband may have had follicular lymphoma for years before it was discovered. It is an indolent (slow-growing) variety and the division rate of follicular cells is quite slow for a cancer. Thus, as Max said, not even the fastest growing lymphoma known (Burkitt's Lymphoma) grows anywhere near that fast. Your heightened vigilance is good and quite natural, but we are still in the cold and flu season. 

Ret4
Posts: 15
Joined: Aug 2017

My husband's primary care doctor just called with blood test results. His white blood count is very low. Is this neutopenic fever? No other symptoms except fever. Also blood in urine but he has had a history of a little blood in his urine and has been under the care of a urologist for years. Still, not sure if this is something else. He is on Levaquin 500 mg and I'm hoping this will help keep any bacteria at bay but the fevers continue. My husband's last chemo treatment was early January and tests after that showd his white blood count as fine. I have no idea what could be causing this now. We will call the oncologist in the morning and see what he suggests. Has anyone had any experience with this? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

Ret -- at face value it does sound like his fever is neutropenic.  As Shady observed, the "when" and "what" values for his most recent WBC results need to be reviewed now by his oncologist.

A fever of 102 is serous for any adult, expecially a chemo patient.  His oncologist ought to be very energetically working this case and getting an answer.

The cause might or might not be residual from the chemo, but again, it is NOT from active Lymphoma disease; I see no way fior that to be possible, as stated before, one week after a totally clean PET.

But foremost for you to remember is that all of us here are laypeople, not medically trained.  You need to be bugging his oncologist in the 'buggiest' way possible,

max

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

What is his WBC Now and what was it at the end of chemo?

Ret4
Posts: 15
Joined: Aug 2017

I'm sorry I didn't get back to you sooner. My husband is now in the hospital which is exactly where I want him to be. His WBC was "8" about 4 weeks ago and now it is down to "1.1". He is being tested for everything under the sun but so far they have no idea why he is neutropenic and why the unrelenting fevers. He gets relief with Tylenol but his temp always rises again at some point. He's been seen by a infectious disease doc (among others) who told us today that sometimes they never find the cause of these neutropenic fevers.The question is, why is he suddenly neutropenic 7 weeks out after chemo? All other tests come back fine. The only blip in his blood work is the low WBC. Urine and blood cultures all normal. Chest x ray normal. He is on strong IV antibiotics since early Wednesday AM when he was admitted and fluids as well. 

Thanks so much for your advice and input! 

Evarista
Posts: 254
Joined: May 2017

Ret, sorry to hear that this is going on.  I wrote a post about "LAN" a while back (I had it ~8 weeks after finishing chemo).  I'll try to get back with more info on it later, but you may find reading that post a little helpful.  Maybe. https://csn.cancer.org/node/311768

General comment: febrile neutropenia is serious business and not to be ignored.  Glad that you are working with your medical team on this.  All the best.

Ret4
Posts: 15
Joined: Aug 2017

Evarista, thank you so much for your response! Were you having fevers too? If so how long did they last? Can neutropenia cause fevers of unknown origin in itself? (I'm going to check out the link you provided.) 

Right now I feel my husband is in the wrong hospital. It's a very good one and I brought him here because it was closest under an emergency situation and they have been in contact with his oncologist at MD Anderson, Cooper in NJ. I'm sure they have done all the same tests that would have been done at Cooper but now I would like to see him transferred there where they have all his records. Unfortunately it is the weekend comming up but I am going to push for that.

This forum is such a comfort to me. Thanks so much for being there.

Evarista
Posts: 254
Joined: May 2017

Caveat: I am not a doctor.  

Dear Ret, I hope I did not confuse you.  LAN is not the same as febrile neutropenia: I had no fever and my white count recovered on its own slowly. Much less serious than what is going on with your husband. Whether one can lead to the other, I really don't know.

My understanding is that care for febrile neutropenia is largely "empirical" and supportive.  Lots of antibiotics, etc. Hopefully his situation is being managed by his Oncologist at MD Anderson. Electronic record sharing should be possible...Ask both facilities about that. Hang in there and hoping for all the best.

Ret4
Posts: 15
Joined: Aug 2017

Thanks for the clarification Evarista! My husband is finally home from the hospital. No more antibiotics or fevers. Night sweats greatly reduced. Bone marrow biopsy had good initial result but still waiting for final result. (Something about chromosones?) WBC is still low so I'm keeping him in a bubble until his oncologist appointment on Wednesday. He has an appointment for new blood work today. They are thinking this is LON from the Rituxan.

Did you get any type of injections for your low WBC? They are talking about giving him something twice a week. Also, how long until you WBC returned to normal on it's own? Any info from your experience would be so apprectiated! 

I'm thinking maybe I'll start a new thread about Late Onset Neutropenia to see if there are others here who have experienced the same thing. Thanks again!

Evarista
Posts: 254
Joined: May 2017

Hi Ret, been thinking about y'all.  So glad to hear that he is doing OK.  As I think I mentioned in my earlier thread on LON, it tends to go unrecognized because we mostly do not get our blood drawn every week and it typically resolves on it's own as long as one does not get sick (i.e., get an infection). It just comes and goes without anyone being the wiser.  Luckily for me, nothing untoward happened.  

We only discovered my LON because it coincided with my 4-week blood draw, at which point I was told to resume neutropenia precautions.  I may have dodged the infection-bullet because I was still staying very compulsive about hygeine and exposure to things that pose a risk to a neutropenic individual (unwashed fruits/veges, raw or rare meat/fish, large crowds, etc). My count was not low enough to warrant additional treatment with Neulasta, etc., but I think they did have me restart the Levoquin (antibiotic).  And of course, take precautions, which I stayed rather obsessive about for quite a while. Repeat labs two weeks later showed my counts rising, which is consistent with how LON is described in the literature. Another small rise two weeks after that.  They also did flow cytometry to check for evidence of circulating tumor cells and found none.

As for the relationship between LON and febrile neutropenia, I have not seen any literature relating the two.  My impression is that they are different beasts. For LON, most of the literature relates to folks with autoimmune disease, since Rituxan has a long history there. The good news, if you can call it that, is that the one very small prospective study that I found for lymphoma patients suggested a positive correlation between an episode of LON and long-term survival. I got little response on my earlier thread about LON because I think simple LON is generally missed by both patients and physicians unless something goes sideways.

Hope he continues to do better.

Ret4
Posts: 15
Joined: Aug 2017

Evarista I just saw your response! Thank you so much! We see the oncologist on Wednesday so we'll see what happens then but thank God he's feeling good! So happy you are well!

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