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ABVD didn't work

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

So I've had a bit a horrible year to say the least. Graduated college with and bachelors of science in May 2016 (at 47- finally!) got a seasonal job doing a federal geological/ soil infiltration study that paid well, thinking my life was finally on the upswing. Then my fiancee of 10 years breaks up with me (she lost her mind and former sweet personality to oxycodone addiction from a surgery) I had to move out of the house (her parents bought her) and move in with my family in PA (from Buffalo). Reeling, I began the long process of living out of boxes, trying to find work, when a series of ailments struck me.

At first I thought I picked up a weird peronchia (nailbed infection) from the gym I was attending in November 2016, but then a month later developed cellulitis on my lip that did not clear up for weeks. I tried to explain to the Patient First doctors (my PA insurance did not kick in till March) that a year prior in March of 2016 I developed and abscess under my left armpit and it was drained but when I went back to have an ultrasound to see where the residual sac was to be removed they could not find anything. I kept asking if maybe I suffer from an auto immune disease because 3 infections requiring powerful antibiotics to beat them in one year? I mean I'm not a doctor but do have a scientific background and I knew there had to be a connection. Everyone, including people in my family thought I was just stressed from my traumatic year.

In late May/ early June of 2017 (can't remember really) on a hot day I was wearing a tanktop and noticed my left armpit (same place I had a abscess over a year ago) was really swollen. I made an appointment with my PCP and he took a look at it and referred me to a Einstein Network for an ultrasound and male mammogram. I had 3 male mammograms that day (I have a whole new level of respect for what women have to endure with those!). The doctors there said they were going to refer me to a surgeon at Einstein. She turned out to completely change my mind on the medical profession. See my whole life I've never really been sick, exercised, never smoked, ate relatively well, and going through all these tests were really starting to make me feel like it was a complete insurance money grab. I was like surely this is another abscess just drain it already and figure out what auto-immune disease I have? Turns out this surgeon saved my life I think.

When I went to visit her Dr Schermer thought I might be right about the abscess. She saw the scar where one was drained the year before but told me the ultrasound didn't show much and ordered a CT Scan. Later on I found out, right then in there (when she saw the CT Scan) she knew it was Hodgkins but did a fine needle biopsy to be sure. Unfortunately (and again she called it) she knew it would be non-diagnostic because the lymph nodes were so swollen she only got fatty tissue and no lymph node tissue. So in one sense I was relieved that it proved non-cancerous but she was determined to get a real diagnosis. She scheduled me for surgery to remove a lymph node for testing (something she was completely against at first because she said lymph node removal is the last resort). I have never been under in my life so I was terrified.

I told her in recovery not to sugar coat anything and she can call and give it to me raw over the phone either way. I got a call a few days later- Hodgkins Lymphoma but assured me she thinks its in an early localized stage and highly treatable! I went through all the normal emotions people do when I was in shocked, I cried, wondered how this could have happened? Dr Schermer then recommended me to a oncologist/hematologist at Einstein.

The night before my oncology appointment my family had left for the shore and I was home watching a movie with my mother who has early onset Alzheimers. I began feeling chills and feverish at the same time and kept thinking is this a symptom of Hodgkins? I went upstairs to get a sweatshirt (it was really hot out so I was a bit freaked out) and noticed my underarm incision was bleeding and even more swollen. 9 days post surgery and it was severly infected (and till this day- 42 days later has not fully healed). My mother was frantic and my aunt and uncle came over in the morning (I had called my surgeon already but did not get a response) to take me to the oncology appointment. I got there with a 104 temperature- they called my surgeon and said she needed to see me right after my appointment to address the wound. My oncologist Dr Tester told me I have NLPHL (Nodular Lymphocyte Predominant Hodgkins Lymphoma) and he believed it was early- stage 2A, since I had no B symptoms. By then I also had developed swollen lymph nodes in my left neck area. He scheduled me for a Pet Scan and 2D Echo Doppler (test my heart health) for staging/diagnosis 8/31/17.

Turns out they had to get pushed back. My infection was so bad I had to go to my surgeons office every day for weeks so she could pack it (keeping the wound open and draining) and change the dressing. Underarm dressings are the worst. I was so freaked out I had this open wound under my arm. It was hard to sleep, then I developed an allergic reaction to the tape used and bleeding blisters formed all around the wound. I was taking 2500mg's of 2 antibiotics daily for a month. It seemed ******* Hodgkins was the least of my problems!

Finally after Labor Day I stopped getting dressing changes and said **** it: This has to close because I can't deal with it. My Pet Scan/ 2D Echo were rescheduled for 9/14. This entire time I had been googling about my Hodgkins, reading peer reviewed literature, but unfortunately my results came through on my patient portal before the doctor made an appointment follow up. All I saw was 'Advanced Hodgkins' on the report and I knew it would be bad. I knew it would be bad because also since the infection started clearing up I developed a bunch of 'B' symptoms: Drenching night sweats every night, fevers/chills not associated with the infection, I lost 10 pounds and my appetite, worse thing is now I have this dry persistant cough I presume because nodes are pressing on my lungs. I wrote down a ton of questions to ask including will I be given R-ABVD for treatment? I met with Dr Tester on 9/22 for staging/ treatment plan. He was surprised but gave it to me straight, initially though to be stage 2A but now is stage 4B. I looked at the Pet Scan and it showed not only the large masses of infected lymph nodes in my left armpit/neck region but the Dr pointed out how there were osseous lesions all down my spinal column and my right hipbone and my spleen is slightly enlarged FDG Avid, and indication of infected lymph node above and below the diaphragm. He said he was shocked but it looks systemic.

Now I'm a tough person. I've been through a ton of **** my whole life including being homeless for 6 months when I was 24. I can get used to any bit of bad news including cancer but this whole thing from the onset would never let me just get comfortable. No sooner than I started using my dry sense of humor on my condition to psyche myself up for upcoming treatment did it just get a whole lot more serious!

I can't lie, I'm scared as **** now. I go back an forth btw I'm going to kick this things *** to- **** what if I can't?. I start 6-8 months of R-ABVD on 10/6. Only bit of good news is Dr Tester says physically I'm really fit for my age, my heart is healthy, and I have a positive mental attitude about it- which he says goes a long way into beating this and being cured. He says really the only thing bad you have is stage 4B and you're male on the unfavorable list. I get a port this week I think (thankfully it's not put me under surgery again!) but I'm worried about treatment. I mean I know I need it (and thankful Rituxan is included as a monoclonal antibody!) but man the cure sounds worse than the disease! I keep thinking I'm going to come out of this feeble, with a bad heart and lungs, and will it work? I already feel fatigued from the advanced Hodgkins (NLPHL)

Anyhow I went to the chemo ward on 9/22 as well and met some of the nurses. I said hi to a patient and said "I'm about ready to join your club!" He said it's only a fun club to join if you get to leave eventually.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Welcome to you here Lixx. You will be needing that gung ho attitude for the next year.

We went many years here with almost no NLPHL patients (except for me and a few others), but in the last year, have had a deluge of them.  If you look back through the treads begun in the last year you will find them, and all are worth reading for you.  And no, NLPHL is not becoming more common than before -- there is no evidence of that.  It has been around as long as Lymphoma itself.

If you look back through my posts over the years, you will see that what I am about to share with you  below I have shared before 100 times with others.  But neither they, nor I, much feel like digging back through all of that.  The regulars and old-timers will either ignore those memories, bear with us here, or simple skip my "NLPHL Intro."

Much in your diagnosis reminds me of me.  A bit older at diagnosis than is normal for NLPHL (you 47, I was 53). Advanced disease, NLPHL is ordinarily discovered at Stage I or II.   I was a heavily involved Stage III-B, you a IV-B.  So yes, you have at least 2 "Unfavorables" in your chart. Other Unfavorables could be specific blood test values, and a few other variables.  This lowers predicitions for so-called Five Year Freedom From Disease (FFD) estimates, but do not dispair, since even with Unfavorables, NLPHL remains very beatable.  Your percentile liklihood of being FFD in five years is still over 50%, since my estimate at diagnosis was ~60-65%.  This might not seem like a new Cadillac on Christmas morning, but believe me, there are many worse scenarios written about here weekly.  I remain FFD at approximately 8 years now.

Another recent spate is that many of the people presenting with NLPHL have atypical or subvariant disease. That is their NLPHL is not "normal" NLPHL, but has T-Cell or other odd-ball involvement.  This means that you need the absolute best and most conclusive pathology/diagnosis possible. I recommend that your biopsy be reviewed by at least one additional pathology lab.  Even though you sound a bit strapped for cash, I recommend you get the insurance to agree to this.  Your prolonged issue with recent infections suggests to me that you may have other autoimmune issues, which should be ruled out.

R-ABVD is indeed the current gold standard for NLPHL. It is first choice among probably 90% of the Hematologists in the US (an approximation on my part), as well as England and much of western Europe.  Since you are as you state in very good shape going in, you will come out a bit worse for wear, but should maintain normal heart and lung function.  

The two worst drugs in ABVD are Adriamycin, which in about 2% of users causes delayed thickening of the heart muscle, which mimics congestive heart failure (CHD). Symptoms of this can be delayed as long as 7-10 years after use.  But 2% is a pretty small number, and Adriamycin is also in most of the other alternative durg combinations; it is in R-CHOP and R-EPOCH, for instance.

Bleomycin is the other worst bad boy in ABVD.  It causes lung toxicity of various forms in around 10% of all users, but ordinarily, this toxicity passes after treatment ends.  But, it causes lung fibrosis in 1 to 2% of all users, and fibrosis is permanent.  I have fibrosis, but the cause was never absolutly linked to Bleo, but my toxicity surely was.   Signs that serious toxicity are beginning are severe cough that will not stop (at least it does manifest warning signs at the beginning).  Bleo is NOT in CHOP.   Bleomycin toxicity chances increase with age, previous application, and previous lung disease. But it can occur in any user.

The third most common problem on ABVD is that the Vinblastine will routinely cause neuropathy, or numbness in the hands and feet. Usually this is mild, at other times severe. Usuually it passes after treatment ends, sometimes it does not.  Mine came down in the severe and permanent categories. Vinblastine or its sister drug Vincristine are also in CHOP, EPOCH, and most Lymphoma cocktails.

Rituxan is only effective agains NLPHL among Hodgkins-type Lymphoma. No other HL receives Rituxan, making it ordinarily a NHL drug only.  But it is of great vaule against NLPHL.

NLPHL is nearly always put into full remission by first-line treatment. But again, we have recently had two cases that were not.  Overall, NLPHL, once in full remission, never reoccurs for around 85% of patients who entered full remission.  That leaves the other 15%.  Chances of remaining in full remission are better for people who finish all of the scheduled treatments, since residual cancer cells undetetable on PET or CT must be killed off completely.  I did 6 cycles, or 12 infusions, of R-ABVD, which is 6 months of tretment.  I was in or near full remission by the 4 month mark. But ending my treatment then would have been a very ill-advised move, for me or anyone else with indolent Lymphoma.

You should emerge from this a winner. Most people do.  Expect by the end of the second infusion extreme fatigue and weakness. I needed assistance with my daily affairs by that point, but not all do,

max

 

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

Thank you so much for all that info Max! I read a bunch of those threads before signing up and I knew I was in the right place. I'm not 47 anymore though lol. I turn 49 on October 1st this year. Sorry I started my horror story in late May 2016 when I was turning 48 in 4 months. So yeah cancer is NOT the gift I wanted when I turned 49! But silver lining? If I turn 50 cancer free I'll be a happy camper.

My blood tests came back really well- albumin etc. So that's also a bit of good news if any can be found.

Since I was unable to find work I had to go on Medicaid in March 2017 and to be honest even though I'd rather have a career and be working I've never been more thankful for it. I can't imagine what these bills would be like without the assistance. I mean the ultrasound, mammograms, ct scan, pet scan, 2d echo, surgery, bisopsies.....I'd be hurting big time. Sucks I have no income but my whole life I've never used assistance and having it came just at the right time.

I honestly think those infections were the start of my Hodgkins to be honest. I only developed swollen lymph nodes around May of this year. There is no way since May it could have advanced to stage 4B since this particular Hodgkins moves at a glacial pace. Unless I have some hybrid aggressive form. Doctor Tester said I had no Reed Sternberg cells and CD20 was what he found. I mean maybe all those infections were my immune system trying to fight off the cancer then I finally got swollen lymph nodes which alerted me something was really wrong?

I'm already pretty fatigued like I have the flu (but then again I just got a flu shot over the weekend as a caution before starting chemo) but I think I'm going to order more Death Wish coffee to help with that!

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

Well you heard from Max and I have little to add. I also had or have NLPHL . I say had because I am waiting to find out if indeed it has come back. I was diagnosed at 52 and started treatments on my birthday in March of this year. I was 3B and lost 42 pounds. I was one that had RCHOP because it had transformed into NH T Cell rich B cell aggressive Lymphoma. I did not think the first 4 treatments wereweeks too bad. The last 2 I was worn out. Then 6 weeks after the final treatment life started getting back to normal. I still have a way to go but at least the severe fatigue that started before treatment is gone. 

I should find out in the next month if it is back and what to do. 

Wishing you the best. There is a lot of support on this forum so come and ask questions and share anytime.

Sandy Ray

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

Well here's to hoping your NLPHL is gone for good sir! Wow 42 pounds? Was it because you just had no appetite at all from the Hodgkins or treatment? My Hodgkins seems to have made me never hungry, but I force myself to eat- and I'm trying to eat a bit healthier. I mean I joked (I have a bit of self deprecating sense of humor) to my closest friends that I'll probably drop that 20 pounds thanks to Hodgkins I could never seem to lose but wow I'd be nervous losing that much. I went from 202 to 192 in the last month.

That's very promising that you said the severe fatigue that started before treatment is gone. It's very depressing. I was a pretty active person but sometimes I just lay in bed because I'm just so damn tired! I hate it.

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

Well the weight loss was  from just a loss of appetite. I am a small person who was a little overweight. I weighed about 198 starting out. My dream weight was 165 which was no problem. Great weight loss regime. I am now back up to about 170. I could not imagine ever being hungry again. I am now starving almost 24 /7. Unfortunately my metabolism has not increased. So I have to curb my eating some. Loss of appetite was from Lymphoma mainly. Near the end of treatment was from the Chemo. If you can keep your muscles active. My atrophied terrible and I have a lot of work to do to get that back. Not like I was muscular before but now I have very little strength . I feel good but I cannot lift or climb very well. If I do try and do anything it will wear me out. Oncologist said that would take about 6 months. He has been dead on for the most part. I was more patient with treatment than recovery. Although just feeling good and feeling like getting out and about is the most important. 

Keep us posted.

Sandy Ray

po18guy
Posts: 996
Joined: Nov 2011

Sorry to welcome you here! But, as you can see, correct pathology is crucial to proper diagnostics, and diagnostics are crucial to proper treatment. Proper treatment is necessary for the best outcome. But, it all follows from correct pathology. NLPHL is one of the odd ducks of lymphoma - which is an odd duck in the cancer world. CD20 nails it down as a B-Cell Lymphoma, since CD20 defines a B Cell. That much is good, since some extremely rare occurrences of Hodgkin's are of T-Cell origin rather than B-Cell, which can greatly complicate things. You can also see that, lacking Reed-Sternberg cells, its identity as a Hodgkin's variant is in questiion. It seems to be related to a precursor of Diffuse Large B-Cell Lymphoma in certain cases. As with many lymphomas, the picture simply is not all that clear. 

As to prognosis such as Karnofski score, International Prgnostic Index and the other predictors, they attempt to be predictive and statistical in nature, meaning that they apply to exactly no one. They meausure possible outcomes only. In truth, we each form our own survival curve and prognosis. I guesstimate that I have about a 1% chance of being alive after nine years of what began as a poor prognosis and dropped immediately, and several times since. I choose not to pay attention to the prognostic indicators.

Some tend to panic once they are placed on a salvage regimen, thinking that it is near the end. Well, it was my 5th salvage regimen, seven years into this battle, which placed me in full response. And that was after two relapses, a mutation into two subtypes, and a secondary marrow cancer (MDS) caused by extensive treatment. We hear a lot these days about "Outliers" - those who are outside of the norm; exceptional cases for various reasons. Aim to be an outlier, as you will not achieve that status unless you aim for it.  

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

I went to get my port put in today but they could not do it. I developed an abscess under my left armpit towards my left nipple and have been taking Keflex (luckily I had a bottle of 56 capsules from August) for 4 days straight and did not have to deal with a emergency room visit over the weekend. And while it appears to be healing up the surgeon would not do it (rightly so) with an infection so close to where it would be. Can't delay treatment anymore so he talked to my Onc and they settled on a double pic line for now.

My chemo schedule is super weird. They are just doing Rituxan tomorrow and ABVD on Thursday. Reason being they said in advanced cases with first time Rituxan usually there is a strong reaction and its a long drip. The weird part is they have me scheduled for the 13th and the 20th. I thought I was supposed to get a week off in btw chemo cycles?! Maybe since I've had so many delays and the 4B diagnosis they really want to get going?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Sorry about the port delay Lixx. A port can be installed either side of the chest (L or R), but I understand the surgeon's hesitancy. A PIC Line sucks -- very inconveneient.  I would push for the port install at the first opportunity.

R-ABVD is usually given all at once (same sitting). But oncologists vary this stuff as necessary. Usually, R-ABVD is once ever 14 days.  But do not let it bother you, they know what they are doing.

Rituxan is a LONG BAG.  My Rituxan bag was a good 3 hours, even later on, after I got used to it.  My infusion day was 8 hours:  I got there about 7:45 AM, and left at about 4:00 PM.  This can be a marathon, and by mid-day I was dragging my IV tree to the restroom every 20 minutes; it is a huge amount of fluid.   It might be advisable for a patient to break this up a little if there is clinical reason to do so.   Other combos require inpatient delivery, so do not fret.  My 8 hour day was despite the fact that, according to my infusion RN, I got all of the drugs "wide open," or max rate.

I do not think 4B is a factor, since R-ABVD will do about the same thing for a 4B patient that it will do for a 2B.

Another part of your routine will be going for your Neulasta shot, the WBC stimulant. This has to be at least 24 hours after the AVBD portion, but withn 48 hours, so the 'window' is small.  I do not think that the Rituxan would factor in to what day the Neulasta is given; it is a tiny needle shot usually administered on top of the belly. Painless.

Continue writing and asking all questions that occur to you big guy,

max

Evarista
Posts: 261
Joined: May 2017

Hi Lixx...Sorry things are not going as smoothly as you would like, but hopefully everything will be sorted quickly.  A couple of suggestions for dealing with your double-PICC (I had mine in for 5+ months).  1) get some "tubular net dressing" and cut a segment to hold your PICC ports from flopping around.  This will keep you more comfortable at home.  Be sure to relocate them under the dressing frequently so as not to get sore spots underneath the caps.  2) Coban stretchy material is also useful while getting chemo.  Wrapped around the ports in just the right place can keep the nurses from inadvertently tugging on them.  Good luck with everything.

Another helpful thing if you are going to be in-hospital: I took a bathrobe, sliced open the shoulder and arm to put in snaps on the PICC line side.  That way, I did not have to disrobe every time someone needed access to my PICC...Which was frequent! You can buy clothing that does this, but it's expensive.  I found a $10 robe and just fixed it up.

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

@Max- you weren't kidding! Started at 8:30am ended at 4:20PM. They gave me Benadryl and Tylenol to counter the adverse reactions since it was my first time. Slow drip at first 20- then 40 then I got to 128. Smooth sailing they couldn't believe I wasn't having any reactions. But that all came to a standstill. At 1:30 I developed a chill I could not get rid of (rigors? I believe they called it). I was shaking uncontrollably even with 3 heated blankets on me. A team of nurses and my Onc quickly came over- I had a temp of 103.7 (and super cold). Pumped me with a steroid, more tylenol, and benadryl. Soon I was a furnace and peeling layers off. Good news is that means the Rituxan was doing it's job on the CD20! I feel better as I'm writing this and not coughing as much at all. My oncologist believes after 6 treatments I might be in full remission and my symptoms will be alleviated (night sweats, chills, fevers, cough).

Oh he said he's doing the Rituxan every week for 6 weeks that's why it seems like I have chemo scheduled each week. The ABVD part which I begin tomorrow at noon is every other week.

@Evarista- yes I did get that tubular net dressing-it's a lifesaver! I don't mind the pic line for now because I needed to start my treatment which had been delayed already by a month but I'm really looking forward to getting it taken out and the port put in! Hopefully this abscess infection disappears in a week or so. I already was told I'm going to have to have a home helath aide come over and flush the pic line starting Friday. Good news is they'll show me how so that will be short lived hopefully. I mean I saw it today and I did it for someone 20 years ago so I should be able to.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Lixx,

I have talked to a lot of nurses about Rituxan over the years. In fact with my long-term followship RN last August. She said that years ago she was on the team that gave the first-ever Rituxan infusion at my cancer center, which is linked to a teaching hospital, today about 30 oncologists.  I don't remember the year, but Rituxan is not a new drug, around a "long time," at least in "oncology time."

She said that about 5 minutes in, the patient went into full arrest, but was brought back readily.  That patient later was able to get Rituxan as necessary.  Severl writers here have experienced full arrest from Ritux.

These frightening episodes are almost always linked to the first infusion. Much less likely thereafter.

As I wrote above, I started slow on my first infusion, but was going "full blast" before the end of that bag.  And full blast thereafter.

However I got severe chills EVERY INFUSION -- all 12.  This usually began almost as soon as the infusions began, and were over within less than 30 minutes.

max

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

My Rituxan was given the first treatment by itself and the next day I had my Chemo. First day of Rituxan was 8:15-5:00 a long day for sure. It did great though. The tumor on the outside melted away and I assume the ones inside were doing the same. I did not have any reactions after the first treatment. Wishing you the best. Eat whenever you can and lots of fluids. Fluids are most important especially on the first treatment to prevent tumor lysis.

I was like Max after they pushed all that fluid I got lots of exercise pushing that IV pole back and forth to the restroom. 

Glad to hear your updates . 

Sandy Ray

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

Got through the first chemo on Thursday. Much shorter day. Developed a fever of 102 when I got home was freaked out lying in bed having trouble cooling down- my family called the hotline for Einstein and they told them to give me tylenol (which me and my brother in law argue about all the time since I'm an avid Advil user- it just works on me best). Finally got to bed (heatwave here wasn't helping as we packed all the AC's away).

Next day I felt tired but much better and no fever. Today I'm a bit queezy so I popped an anti nausea med they gave me just in case. I have two diiferent home health aides coming one came yesterday to show us how to flush the pic line and will be back Tuesday to change the dressing around it, and I assume the other coming Monday is going to check on the abscess that is almost healed I guess? I really can't wait to get that port so all this extra work at home can stop.

Good news is my cough has stopped, night sweats aren't as crazy, and I feel like all those lymph nodes in my neck, chest, and left armpit shrank a little at least. Bad news- I'm scared my immune system is shot and I'm drained but trying not to think about the downsides of chemo too much. I have eaten loads of protein and some fruit. Plenty of water as I've been peeing like a racehorse. Which is good to flush those chemo drugs out along with dead cells I thnk.

lindary's picture
lindary
Posts: 652
Joined: Mar 2015

My first time getting it seemed to be going very smooth. I don't remember how long it was until the roof of my mouth felt weird. When thenurse came in the feeling went away. She took vitals and as she did so that weird feeling came back. Right away another nurse came in and they agreed to treat it as an allergic reaction.  Since then the worse I get is restless leg but that is likely from the high dose of th benadry and goes away as soon as the Rituxan is started. 

I not only had Rituxan as part of my 6 cycles of R-Chop but also with 3 cycles of RICE and now the 2 year maintenance period. It is so routine it is now my Spa Day, day off from work. 

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

So I've had 5 Rituxan treatments and 2 ABVD treatments (1 cycle) so far. This Friday is my last Rituxan and then ABVD so it's a long long day in the chair. I had some serious issues after first chemo and had a string of staph infections (boils) which again delayed my port placement. Then my ABVD got cancelled one week because my either my ANC or WBC was too low (.4 I was told!) Oncologists started me on the Neulasta shot and this has stabilized my counts to almost normal. I finally had the pic line removed and got the port.

The Oncologist is happy with my progress after a rough start. Obviously no re-scans have been taken but he feels the lymph nodes are really retreating which is a good sign. I'm skeptical because this week some in my neck appeared to swell up and shrink again and it's happened a few times. Night sweats are also coming and going, where before they seemed to be starting to subside (never completely). Is this normal for the nodes and sweats to almost go away then come back and start to shrink and go away again? 

I honestly won't be super optimistic till I see a new petscan which I guess won't happen till I've had a few cycles of ABVD. The doctors think that if I'm really improved they might dial back some of the harsher aspects of ABVD drugs to lower doses. My main concern after initial diagnosis (4B) was the Hodgkins in my vertebrae, spleen, etc. I can feel the nodes getting smaller (despite that one in my neck) and my Hodgkins symptoms (cough, no appetite, fatigue etc) have subsided, but I can't look inside myself to see if the spleen, vertebrae have gotten better.

Side effects from treatment have been pretty minor after the initial shock to the system. My beard thinned a lot. Body hair doesn't grow (I'm kind of happy about these lol- low maintence), fatigue is still major after chemo for about 4 days. I had horrible heartburn but never nausea. I'm taking prilosec for that now.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

I agree with your overall sentiment that you are making progress, perhaps pretty good progress.

My hematologist and his group at our teaching hospital (about 25 oncologists) ordinarily doesn't do a progress CT until three full infusions are completed (all drugs scheduled administered 3 times).  There are exceptions, but this is their general policy, so your doctor is similiar.

Nodes don't ordinarily "oscillate" up and down, at least not from Lymphoma, so I have no idea there. What will oscillate are hydration in the patient, etc.

Pulling for you and hope to hear good news in two weeks or so,

max

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

Thanks Max! Yeah I think I heard my oncologist/hematologist say they had to do 3 cycles first before another petscan. So I guess 4 more chemos (2 cycles) so I guess that means after Dec 15th. I'm going to basically put it out of my mind and try to not think about it at all.

The chemo curve was tough but usually 4-5 days (after chemo) I don't feel like a complete zombie. I'll be glad after the last Rituxan is done tomorrow because they dose me pretty hard with tylenol and benadryl prior to that and it knocks me out for 3 hrs in the chair. Guess that's a good thing to kill time, but it's never sleep sleep, more like out of it but still awake sleep.

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

My oncologist ordered a Pet Scan for first week in December and I would only have received 2 cycles of ABVD and 6 Rituxan treatments. Guess he has high hopes- I on the other hand have to manage my expectations so I don't get disappointed.

That lymph node in my neck keeps shrinking and then getting bigger over an over so I suspect it's going to be a problem node they might eventually have to zap with radiation.

I try to be the half glass full kind of guy but I always seem to graviate towards half empty. Like yesterday all I could think of is what if none of this works, or works and I relapse? Hard not too even though I know I can't let that **** enter my mind.

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

So I had a interim pet scan on 12/7 and got my results today. Trying to be positive but it's hard. First let me say I've had 6 Rixtuxan treatments that started on 10/3 and ended 11/10. My ABVD chemo though has been erratic at best and perhaps that's why its not going as well as expected towards recovery. I've only had 2 cycles (4 treatments) because of infections and low ANC. So Chemo on 10/5, then 10/27 (delayed from 10/20), 11/10, then 12/1 (delayed from 11/24) and I'm due again this Friday 12/15 to start cycle 3.

So the first thing my doctor says to me is there has been nothing normal about your diagnosis or treatment, but there has been progress.  There is no longer activity in my spleen, the osseous lesions appear to have gone in my vertebrae (or as the report puts it no definite involvement in osseous structures though sensitivity is decreased secondary to red marrow hypertrophy).

The rest of the report goes on to say slight interval decrease in size of multiple metabolically active lymph nodes, but markedly increased FDG avidity throughout lymph nodes, which has only slightly decreased since last study. Marked diffuse increased FDG uptake throughout red marrow likely related to treatment.

Here are some of the size differentials of lymph nodes in comparison to last time (with SUV maxes):

1) Neck: Active lymph nodes in left lower cervical into left supraclavical area- 3.5 x 3cm previously 3.9 x 3.4cm SUV max unchanged at 24

2) Chest: Unchanged 4mm pulmonary nodule in right upper lobe no increased FDG

3) Chest: Large active lymph nodes in left axilla and subpectoral- largest left axilla 4.2 x 4.1cm SUV max 30- was 5.9 x 5.4cm SUV max 35 previously. Largest subpectoral lymph node- 4.2 x 2.6cm SUV max 21, was 6.4 x 4.4cm SUV max 35

4) Abdomen and Pelvis: slightly increased prominence of top normal size periportal lymph nodes, slightly increased FDG avidity. Large mesenteric lymph node now measures 2.6 x 1.8cm with minimal FDG avidity, previously measuring 4.2 x 2.5cm SUV max 9.

Again I'm no doctor so I only can see slight decreases in node size /SUV. My doctor wants me to see a lymphoma specialist in the next month or two in Philadelphia but the colleague he suggested isn't in my Medicaid network I found out when I got home. For now he wants to stay the course and hopefully no more staph infections or low ANC and I can keep on this every two weeks ABVD schedule (I go again Friday).

So should I be hopeful? Like I said I wasn't expecting complete remission after 6 Rituxan and 2 cycles of ABVD but it sounds like the doctors were being overly optimistic (but won't admit it). I mean I was stage 4B NLPHL and now no activity in my bones or spleen and slightly shrunken lymph nodes (given my chemo has been erratic)- but FDG avidity is still strong.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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When I got my PETS back in 2009, the hematologist never mentioned FDG or SUV. But my progress in treatment was not problematic. All he ever referenced (to me) was node size.  A few people here in the last year have written about SUV, but I am not sure how much to make of it.

What I find most negative in your report is that your doctor "wants you to see a Lymphoma specialist."  By all means !  Lymphoma is at its worst when first-line treatment stalls.  Things become infinitely more complex, fast.  If I couldn't do a consult witht he doctor recommended by your doctor, I would nonetheless see someone for a review.

Progress is progress, and at least early in you have experienced across the board size reductions among the nodes.  Ordinarily NLPHL is easily put in to full remission with little resistance.  If it is being resistant (which is unclear at this point), it may be because other things are going on.  As I wrote to you when we first met, correct pathology/diagnosis is fundamental. 

max

 

Lixx's picture
Lixx
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Joined: Sep 2017

I'm very distressed also that my oncologist wants me to see a specialist. I'm also wondering if the diagnosis is correct myself since NLPHL and DLBCL (Non Hodgkins) have so many similarities. I did ask my oncologist yesterday if it could have mutated into Diffuse Large B Cell and he said "Not during treatment!" but then again how is it that I received 4 chemos and 6 Rituxan and cancer activity has increased in some regions?

FDG is the acronym for the tracer dye they use. SUV is standardized uptake value- which I assume means just how active it is.

Yeah I'm pretty upset that people keep telling me (mostly the doctors at the hospital) that NLPHL is easily treatable when it doesn't seem to be going that way at all. While my hopeful theory is (because its now absent from my spleen and bones and there has been some reduction in the nodes) that perhaps my chemo has been too sporatic (twice I went three weeks without it) and maybe it enabled the cancer to regain a foothold, still it is NLPHL and should have responded better than this. Especially with the 6 rounds of rituxan.

I almost don't want to do chemo this Friday because what if this is not working? I called and left a voicemail with the specialist my doctor recommended and spoke to. His office requires the biopsy slides (of course) so hopefully the two doctors discussed it over the phone. I'll follow up by requesting them when I go in Friday anyhow. I'm terrified now thinking they'll see me and say I need some stem cell transplant etc.

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

Me, I would get the infusion Friday. To not do so puts you 'AMA,' or 'against medical advice.' It might have insurance repercussions (I am not certain).

Doctors do not move rapidly enough at times, so it would not surprise me if this Friday the two had not yet spoken.  I view your case as atypical, but not horrible.  Give it some patience.  And you and I are not doctors, and cannot believe that your disease has morphed into something else on a suspicion.  That is not medicine.  Over my five or so yearrs here, I would say about 20 NLPHL patients have written to this Board. Most went straight into C.R.  A few had severe trials and required long hospitalizations, but got through. And 2 or 3 have reported grave situations that seemed to not be working.  But most of those discovered that they in fact had other diseases.  It is just what I have read here....

As I suggested yesterday, it is possible that the drugs WILL work. Rituxan by itself is (to my knowledge) never curative of advanced Stage IV NLPHL, so do not read too much into having had numerous Rituxan infusions.  Rituxan for what you (or I) have/had is supplemental and assists the combination, but cannot work by itself.  Rituxan for years was not used for any forms of HL at all -- it began exclusively as a weapon agains NHL, and Rituxan WILL defeat some indolent NHLs (like Follicular), but this has never been the case with NLPHL.   So lack of radical node reduction thus far is not highly surprising.  Advanced NLPHL always requires heavy ABVD, CHOP, or similiar combinations (Stanford V, or others).

Your REASONING is sound and matches what is known, but it is also highly SPECULATIVE thus far. You are throwing out ideas that are POSSIBLE, but which have little or no evidence to base them upon.  And a little frantic, understandable also.

The most useful thing you can do at this point is getting another oncologist to do a formal review of your diagnosis and treatment plan. The oncologist ideally will be Board Certified in hematology also. All Lymphomas are blood cancers after all. My hematologist began  his greeting to me and my wife by oversimplifying a little ansd saying that "Lymphoma is essentially leukemia, in that both are WBC cancers, but Lymphoma has taken up residence in the lymphatic system, instead of the bone marrow and bloodstream."   

Getting reviewed by a better doctor is what will most help at this point in my layman's opinion,

max

Lixx's picture
Lixx
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Thanks Max. Yeah I know I'm no doctor, I just play one on TV lol. Kidding, I do have a scientific background though so I tend to get curious and use reasoning but yes pure speculation of maybes. Maybe it's just to early to tell (I'm speculating again).

I keep referring to my doctor as an oncologist but he is in fact a hematologist. I guess I should have clarified that awhile back but as I'm always going to the oncology office at the hospital I just kept saying oncology.

I did take the steps to call this other doctors office at Jefferson Hospital in Philadelphia- just awaiting a return call for an appointment. Even if it's out of network my dad told me yesterday he will cover it. My current doctor also told me if there are any problems getting an appointment just let him know. So I assume he and this other doctor are colleagues.

I tend to go to worst case scenario in my head (and easy thing to do with cancer) so based on everything known about NLPHL and usual good response to this treatment and what appears not to be the case with me I'm very frightened.

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

Everything in your reply sounds like good moves to me.  It is good that your current doctor is a hematologist.

Hematologists are of course usually medical oncologists also. Yours may or may not be. The titles are usually linked to Board Cetifications the doctor holds. My onc for instance is certified in medical oncology, hematology, internal medicine, and two other things....lots of tricks in his hat.

A relaxed weekend to you,

max

Lixx's picture
Lixx
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Joined: Sep 2017

My doctors felt me up for a good 15 minutes (checking lymph node size) before getting one of my Grannix shots last week and are now saying they think there has been progress and we'll stay the course for now, no need for a lymphoma specialist unless the next Pet Scan shows no real progress. Now I'm due to complete cycle 3 of ABVD this Friday so I assume this next pet scan won't be until February, when I've done cycles 4 maybe end of February at the end of cycle 5?

I'm a bit concerned because the progress didn't seem that much, but they liked my line of reasoning that I had infections and delayed my ABVD twice so I only had 4 chemos when I should of been past 5 at the time of my interim pet scan in early December. Not sure if that makes a difference. Things seem steady now with the Grannix shots.

The specialist finally did call me back and scheduled an appointment but cancelled it two hours later because they didn't accept my insurance (where I'm being treated checked and said they did but I guess they were wrong).

Anyhow two options regarding the specialist because I'm leaning towards getting a second opinion. One I can go along with the doctors treating me, stay the course (which I will do unless seen by a specialist and there is significant evidence my current treatment won't work) and if no progress is made by next pet scan they will find me a in-network lymphoma specialist.

Option 2 (since my insurance site does not list doctors that specialized- only down to the oncologist level- and calling them is beyond a headache and they are so unhelpful) is I get a cash price for a visit to see this specialist and go.

I'm kind of tired of this neck lymph node expanding and contracting 4-5 times a day and it has me worried treatment is not working. Doctors didn't believe me at first until they saw it when coming in for the shot one day. They don't seem concerned but I've never heard of a lymph node going this crazy. It blows up a little bigger than a golf ball then shrinks down over an over.

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

Thanks for the update, Lixx.

I go to an annual follow-up clinic with my cancer center regarding my HL, something they have me doing for life.  The year I got diagnosed with prostate cancer, I told the N.P. that I had seen a surgeon and a radiation guy, but had not made a treatment choice yet.  I mentioned that I would be interested in my oncologist's opinion, since he is a medical oncologist, whereas the R.O. and urinary surgeon were not.

To my significant surprise, my medical oncologist called me the next day out of the blue and said he heard I wanted to speak to him regarding how to proceed.  I found this very thoughtful.  Then, in two weeks, I got a bill for $150 for a consultation.

I do not know what consults ordinarily cost.  I was an established, in-house patient with this guy. Going to an outsider would undoubtedly be more, but I would think that a doctor reviewing your file would be under $500.  I am interested what others have paid for second opinions.  If anyone can remember the cost, I hope you share it here,

max

Evarista
Posts: 261
Joined: May 2017

One way to look for a specialist in your area (if you have the time & energy) is to look at who is doing studies at www.clinicaltrials.gov  Focus your key words and use the "locations" feature to narrow down the options.  You would need to call each office to see if they are in-network for you.  The other possibility, beyond what you've listed is to see if there is any kind of out-of-network option that you can make use of.  Splitting the cost with your insurance provider somehow.  Good luck with it.

Lixx's picture
Lixx
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So now I'm really scared. I've been trying to tell my oncologist since mid-December that my lymph nodes are not shrinking at all. Yet they've carried on with ABVD chemo and I've gone through 4 cycles (8 chemos). I thought I was developing a pneumonia because I was getting fevers/chills, a persistant cough at night, and coughing up phlegm with blood in it. Chest x-ray proved negative but during the examination at the oncologist office one of my doctors said she could see the lymph nodes in my neck from across the room and she was going to recommend we stop ABVD chemo because clearly it's not working.

Thank you! I've been saying this for 2 months. I always suspected I was misdiagnosed. ABVD chemo melts away NLPHL nodes, and they have not shrunk at all. So my oncologist officially stopped the ABVD chemo (I was 2/3's of the way done), wants to re-petscan to see where we are. I know thats not going to be good. They also want to remove another lymph node (this time from my neck area) and have the lab check for DLBCL, THRLBCL, etc. I'm meeting with the surgeon on 2/26 so I assume surgery won't be till early March. From there I need to make an appointment with a lymphoma specialist but I can't do that until I know when surgery is so I have the biopsy results to bring.

I swear if I was misdiagnosed by pathology I'm considering suing. A) They put me through 8 chemos of hell for the wrong cancer. B) They've given whatever cancer I have a chance to become much worse thus shortening my odds of living. Obviously I want to get to the bottom of this first and get cured if possible but I'm really upset about this.

Evarista
Posts: 261
Joined: May 2017

Sorry to hear that things are not going well for you, Lixx.  You CAN request that the original biopsy material be sent elsewhere for a second Pathology opinion.  If you request that the "blocks" be sent, the 2nd institution will cut slides, stain, view, etc.  You can also have the original slides sent for reading/evalutation. Maybe reach out to MD Anderson, Sloan-Kettering, or Fred Hutchinson to find out how to go about doing this.  Or maybe somebody here knows how.  I have no idea how insurance would handle this or if you need to pay out-of-pocket. Good luck to you.

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twowheels
Posts: 15
Joined: Jun 2017

Empathy for your frustration. My initial trtmnt was delayed a month due to ins approvals for a PET (even after positive biopsy/pathology). I would have accepted a dire fate/prognosis, but more difficult to absorb would have been hearing "if we had only caught this sooner, you would not require a laryngectomy".
[My concern was not the multiple nodes that I could FEEL enlarging but one particular node behind my larynx/trachea that began to affect my speech] I later read (don't quote me) that lymphoma does not metastisize.

re: PET. After confirming with your current Onc/hematologist that there is no medical reason for a delay (infection affecting imaging quality), I would actively attempt to arrange for PET asap. I would also follow every protocol to get the most accurate image possible. (EG: fast, limited physical activity, lots of fluids).

As for me (NSHL), the axilla nodes (where I first noticed a lump), did not reduce in size and they also went from pliable to stone-like by the time I began ABVD. Other nodes quickly melted away (as you mention) but my axilla nodes remained the same size (large chickpeas) and stone-like for 5 cycles before reducing to their current pea-size.
My Oncol was more concerned about SUV activity on my interim PET than size.

Oh, I had enlarged nodes most everywhere: axilla, clavicle, abdomen, groin, even one on my left foot (just left of cuneiform bone). I also required a separate excisional node removal on my shoulder blade but the ones that seemed to change size the most - swell, then reduce and enlarge again, were my neck and occipital nodes.

 

po18guy
Posts: 996
Joined: Nov 2011

If it is not behaving or responding as NLPHL is expected to, then it may very well not be NLPHL. Recent discoveries have shown that some Hodgkin's is of T-cell origin rather than the normal B-cell. This makes a huge difference. Some Hodgkin's cases have been mistaken for Anaplastic Large Cell Lymphoma - and vice versa. There is some thought given to re-classifying NLPHL as a non-Hodgkin's, since it shares little with some established types of Hodgkin's. Thus, ABVD would go away and R-CHOP, R-CHOEP or Bendamustine-Rituxan would step in.

For the sake of your life, I would consult ASAP with a major NCI desginated comprenhensive cancer center. It is insanity to continue a treatment which is not illing the cancer.

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

Po,

You might know that at times NLPHL has been classified as an atypical NHL.  I believe that in a few European countries it is still considered an NHL today.  But internationally abvd remains the traditional first-line approach.  Stanford and a few major cancer centers (unless this has changed) traditionally treat it first with r-chop however.

Lixx, it appears pretty clear to me that your disease is NOT conventional NLPHL.  Every case of NLPHL that did not readily respond to abvd here that I can recall was later discovered to in fact be something else, usually T-cell.

It seems like we have been discussing correct diagnosis in your case since Day 1.  Good luck getting this sorted out, and sooner will be better than later.  I know that you are doing what you can.

max

po18guy
Posts: 996
Joined: Nov 2011

Still learning a lot in that regard. On another forum, I know of two mirror image cases in which both patients were misdiagnosed and treated for the wrong lymphoma. NLPHL was actually ALCL, and ALCL was actually NLPHL. The problem is that pathology and thus treatment was wrong. Even though partial responses were observed, toxicity was cumulative and the fight had to begin all over again. It's still doable, but much more difficult. 

Time's a-wasting. Lixx, get on it!

Lixx's picture
Lixx
Posts: 21
Joined: Sep 2017

Well right now I'm in a holding pattern and there is nothing I can do. I'm approved for the pet scan and just waiting for scheduling to set up a date. I'm meeting with my surgeon on 2/26 and as soon as I have a biopsy surgery date I'm calling the lymphoma specialist to set up an appointment. Obviously I need all the results from these to bring to him so like I said there is nothing I can do until steps 1 and 2 are done.

Believe me I harrass them often. I find it absolutely crazy that I had to present case studies to my oncology team. This is what I gave them:

https://www.hindawi.com/journals/cripa/2014/956217/

So he wants pathology to specifically check for that when analyzing my lymph node (taking that crazy one that expands and shrinks from my neck).

po18guy
Posts: 996
Joined: Nov 2011

It would seem that good practice would have impelled them to re-check your prior biopsy samples, thus saving the time and hassle of additional biopsies.

The jaundiced-eye view is that their corporate lawyers put the kibosh on that They can always claim a trasnformation or a de novo cancer - much lower settlements in that case.

Rocquie's picture
Rocquie
Posts: 832
Joined: Mar 2013

From what I understand, pathology is subjective.

I was originally diagnosed with marginal zone lymphoma. When I went for a consultaion with Duke University, they re-read my pathology slides. They diagnosed the lymphoma as follicular rather than marginal zone (closely similar). Duke did further studies (FISH) and confirmed follicular lymphoma. My doctor went back to the original pathologist, who re-checked the slides and agreed it was follicular. 

I urge you to have your original pathology slides sent for another study/opinion. The excellent website lymphomation recommends a second pathology opinion in every case. 

Best,

Rocquie

 

po18guy
Posts: 996
Joined: Nov 2011

At my second relapse, all nodes were too deep for biopsy, so we had to treat it according to how it (mis)behaved. Well, even then it did not follow the script. Finally, we stopped treatment and allowed it to progress to the point where a node was available. After much argumentation, the pathologist asked my hematologist if I had a cancer history. Ya' think??? OK they said, then it's a cancer after all! It is "consistent with a relapse of angioimmunoblastic T-Cell Lymphoma."

Fine. Except that I had never been diagnosed with that sub-type. 'Splain that one to me, Lucy.

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ShadyGuy
Posts: 399
Joined: Jan 2017

pathology based on looking at slides (very similar to reading CT scans) is very subjective. My Doc compared it to seeing patterns in the clouds. Some see dogs while others looking at the same thing see a whale and a third might see an eagle. You want a radiologist who sees clouds. Its best to rely on chemistry to verify results of a biopsy where possible. Some conditions are very obvious on a slide or CT while others are not. This very aspect is why its best to consistently use the same labs and radiologists for initial diagnosis and follow on and have all results double or even triple checked. My next scan is Wednesday morning. As per always I will pick up the cd on Thursday. I will read the initial radiologists report and then send the cd, without comment, on to an independent radiologist at my expense ($500). “Trust but verify”. We all make mistakes and in my cancer journey I have caught several potentially very serious errors. Some docs are miffed by knowledgeable and articulate patients. If you encounter that explore using other physicians. After all its your life. A key cause of issues in my case was that my lymphoma was both nodal and extra-nodal. Doctors are trained to look for horses not zebras. I had horses AND zebras. Best of luck Lixx. I so wish I could help you.

ShadyGuy's picture
ShadyGuy
Posts: 399
Joined: Jan 2017

today most imaging labs use “pools” of radiologists sometimes working remotely from PCs. This makes it nearly impossible, at least at the imaging facility I use, to get the same radiologist every time. Though its probably not the case, being a natural born skeptic, I imagine some young Dr. half my age working from his/her laptop at the local Starbucks while drinking a latte and playing video games between CT cds. . Probably doesn’t happen however .......

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