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Off to the races

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

Well, after six years since diagnosis, my follicular lymphoma, which is both nodal and extra nodal, is back. The swollen glands are deep in my chest near/around my IMA. Its in virtually the same spots as before and they are each about 5 cm long. First go around I had what started as a laproscopic biopsy but turned into a near fatal procedure resulting in a long hospital stay. I am in charge of my own life so I “negotiated“ a treatment strategy with my wonderful doctor. We will assume it has not yet transformed, even though there are signs it may have(splenomegaly, misty pancreas, etc). It appears to be fairly localized. So no biopsy (I fear that worse than dying, which I can deal with), no PET, no BMB. We will try the Rituxan again supplemented with Fludarabine and Cytoxan (cyclophosphamide). Six three-day cycles spaced 3 weeks apart. Bye-Bye hair! I get a “medi-port” installed after a round of visits to grandkids. Then I am doing my farewell fishing trip with my brothers, son and nephews to Cape Hatteras, with treatment beginning on the 26th.

Would appreciate any tips you may have on the port. Mine will be under my skin on the left side. Also on the outside chance any of you may have had this drug combo would love to have your input.

Cheers. Life is Good. And don’t believe anyone who tells you to choose cancer over health. Cancer sucks!

 

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

Those with a condition similar to min may find this interesting. You will have to cut and paste to your browser.

http://onlinelibrary.wiley.com/doi/10.1002/cncr.20483/full . I promise not to report you for looking at the web unsupervised! Just kidding.

Evarista
Posts: 254
Joined: May 2017

And be well.

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

I have been interested in your case all along because it closely resembles my own. I, too, had both nodal and extra nodal involvement. But my own lymphoma had transformed before diagnosis and I was extremely symptomatic. Because of my B symptoms, I was treated aggressively with R-CHOP. I haven't had as many infusions of Rituxan as you--I have "only" had 20. 

A couple of years ago, my doctor called and said the lymphoma is back.  I've had 2 more scans since then showing no movement. This is where I really relate to you because I think you have been in the same position. Limbo. 

I wonder what happened to make your doctor want to began treatment again? 

I will be seeing my hematology oncologist next month and I am really going to press for answers. 

I have had cytoxan, in R-CHOP of course. I have not encountered fludarabine but I read your link. The combination you will be having sounds very promising. Sorry about the hair. I didn't care for that part either. I no longer have a port but wouldn't hesitate to get another if needed. 

I hope you will keep us posted. . .

Best,

Rocquie

 

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

Mine is in such a place as to be life threatening - near my aorta. Thats one reason why I did not get a port first time.  During the original biopsy, because of the extensive scar tissue, it was really impossible to even identify the lymph nodes. They ended up with just a piece of brown tissue, not a lymph node. That along with bmb from both hips allowed them to type the disease. I was on the operating table almost 7 hours with them poking around inside me and ended up with a ”nicked”  liver and aorta. I lost a lot of blood and I nearly died. I woke up thinking I was dead. I could see what looked like a crimson veil or curtain that pulled apart and in my hallucinations I could see a whole different hospital, kinda like seeing into a parallel dimension. One of the nurses behind the veil looked straight at me like she was going to speak to me. The others with her said “Don’t talk to him or you will draw him over. He still has a chance”. Heavy, heavy sedation. Hallucinating. If thats what LSD does I am so glad I never tried it! Scarier than anything I ever experienced in real life, and I have been through a lot. What people who use drugs would call a bad trip. To answer your question, I declined a biopsy, bmb and PET And convinced my onc to proceed with treatment. Six courses are planned. If I have NED after two rounds we may stop it at four.

I am interested in any inputs on the soft silicone bio port. It is entirely under the skin so a needle is pushed through the skin to access it.

 

 

 

PBL
Posts: 182
Joined: Jul 2016

Sorry for the bad news... Just curious: did you have any symptoms, or was your relapse detected through routine CT?

I wonder why, since transformation is suspected and you're getting Cytoxan anyway, they're not going the whole course of R-CHOP - which I believe is standard in such cases...

Unlike yours and Rocquie's, mine is strictly extranodal - multifocal Primary Bone Follicular Lymphoma. Went straight to R-CHOP due to pathologic fracture, 21.08 SUV (a bit high for indolent lymphoma...) plus 20% weight loss (not initially obese). 

I have had a port from the start, and will definitely be keeping it for as long as I can, knowing that it can do me further service down the line... Not sure what you want to know about it, so will tell you what I think is relevant:

it's usually put in place under local anesthesia - they say it's a half-hour procedure, but my surgeon struggled for over an hour (small veins) - most people do not complain much about subsequent pain and you're given painkillers for a few days - the port is sewn underneath the skin onto the pectoral muscle and is accessed through the skin via a Huber (non-coring) needle - the nurse must be specifically trained - some ports are compatible with MRI (essential in my case, when you need to check what's going on inside the bones) - there are various types of catheters as well (the Groshong catheter has a valve in its tip, preventing reflux). All in all, even if it can take a while getting used to that foreign object under your skin, it saves your smaller veins from being damaged by the chemo, it does not prevent you from carrying on your normal-life activities, and it spares you some discomfort while getting treatment.

Enjoy that trip and do keep us posted on your progress!

PBL

 

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

While hunting in Alaska last September I felt unusually tired. I hiked 50 miles in 8 days and came back very ill. The flight home was miserable. My GP investigated and checked me for parasites ( giardia) and other infections, all negative.said she wanted me to go to a cardiologist and back to my oncologist. My onc felt a small node in my armpit. It was so small I could not really feel it. He said to watch it for a few months. I went back to him in February still feeling very fatigued And having dizzy spells. He ordered a CT which the radiologist interpreted as showing lymphoma was back. I had a second radiologist look at it and he concurred. After my bad experience first time round and after weighing all the facts, I asked if we could do treatment without a biopsy, bmb and additional scans. He agreed and together we came up with this regimen based partly on how well I responded to Rituxan, his experience with similar cases and some vagaries of the lab analysis first time round. He is extremely smart and one of the best oncologists in the Washington DC area. I really trust him but my nature is to “trust but verify”. Just the way I am I guess.

As for the port, does it interfere with sleeping at all? By that I mean do you need to be careful how you lay in the bed? Do you ever feel the catheter flutter in the vein? They plan to put me under general anesthesia and insert the catheter using a wire and x-ray fluoroscopy to guide the process. Is that how yours was done? Were you warned not to fly for at least two weeks after the insertion? If so did they say why?

Thank you for your very kind and thoughtful reply.

 

 

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

is a blister agent and is recommended to be infused using a port only.

PBL
Posts: 182
Joined: Jul 2016

ShadyGuy,

As you well know, nothing is absolutely standard, but normally - past the healing period - your port should not prevent you from doing anything, including sleeping in any position you like. At least, I can assure you it doesn't for me - and I keep changing positions in my sleep.

I assume you are right-handed and the hunting is the reason why they have decided to implant it on your left side - so, it shouldn't be in the way of your favorite activities either. Once in place, it is completely covered by skin, so you can bathe, swim, etc. as much as you want.

I do not believe I've ever felt the catheter do anything funny since it was put in (it goes into a pretty big vein, so even if it floats freely inside, it is not supposed to touch the wall - nothing to do with what you feel when a catheter is inserted into a smaller peripheral vein). To the best of my knowledge, it is standard procedure to use a guide wire and x-ray fluoroscopy, as they need to make sure it is properly inserted, and that the tip is close to the heart, but not too close.

I don't remember being told not to fly for two weeks post surgery, as it was not likely that I would... Maybe there's a slightly increased risk of embolism in the immediate post-op period? Just thinking aloud here... You should ask them any such questions for the proper answer.

I assume you are having it done under general anesthesia on account of your previous traumatic experience with the biopsy. What I don't get is why no PET or BMB, as those might still yield important information... Still thinking aloud here - not discussing the competences of your doctor. "Trust but verify" is also something I live by.

Looking forward to your (good) news.

PBL

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

It was my choice on the bmb and PET. I actually want minimal treatments and tests. It seems that the regimens generally used are often the same with or without transformation. Treatments would likely be the same either way in my case. Why fry my body with radiation and poke holes in my hipbone with no clear advantage? My surgeon says he always uses general anesthesia for insertions but for the extractions he uses local. It is a different guy than the first time. Same practice but different Doctor. I suppose they make more money that way. I don’t like the fluoroscope, which is in my experience rolled around the halls by some low level technician. However its much preferable to having the wire go through the artery wall and into my heart. That happens in 2-4% of the procedures.

One more port question. The surgeon said the port requires no flushing. Did you find that to be the case? I am sure that will all be covered in the orientation given the day before my first infusion.

I get the port on the 13th and go marlin fishing on the 23rd. I always use barbless hooks ( or at least with the barb bent down ) and release all billfish. As for the tuna and dolphin I believe there is a place for them in God’s world too. That place is “ right beside my mashed potatoes”, to quote Ted Nugent.

Cheers all.

PBL
Posts: 182
Joined: Jul 2016

I can relate to your not wanting to expose yourself unduly to radiation and invasive procedures... However, provided that your fNHL has been demonstrated to be glucose-avid - and I suppose you have had all those tests done at least at diagnosis, a PET might enable you and your hematologist to assess response to treatment...

Back to ports: I wasn't aware of the relatively high risk of arterial wall puncture - are you sure you got that right? My understanding was that the imaging is used essentially to check that 1) the catheter is in the proper blood vessel (i.e., superior vena cava) and 2) the tip is not too close to the tricuspid heart valve so as not to interfere with its normal function. I remember the unpleasant moment during the procedure when the surgeon pushed the catheter tip a bit too low while seeking its proper positioning. He pulled it back up a little, and I instantly felt much better.

Your question regarding flushing is of great interest to me, as my port actually hasn't been accessed at all since my last chemo in June 2016 (got subcutaneous maintenance Rituximab)... I have asked several of the hematology nurses as well as my hematologist about that, as I haven't found any literature stating otherwise than "systematic flushing every 4 weeks when not in use". The answer I got is that flushing is no longer done, that there is much higher risk (septicemia) in repeatedly accessing the port than not, and that it can go for over five years without any problem whatsoever, and still remain functional if it is needed again. I imagine - but may be wrong - that this has something to do with the Groshong catheter (hence my mentioning it in yesterday's post), since the valve prevents any reflux into the catheter or chamber once properly rinsed and locked with saline. Fibrin sheath forming doesn't seem to be a problem, as they can dissolve it by injecting some enzyme in the port if need be.

If you do get any clearer information on this particular point, I would really appreciate your sharing!

Not sure you'll find your fishing trip quite as enjoyable as expected with a sore pec... You also may want to ask your surgeon for his approval, as there might be a risk of tearing the aponeurosis your brand-new port will have been sewn onto.

Take care.

PBL

PBL
Posts: 182
Joined: Jul 2016

Thought I'd add this (found here: http://www.cancernetwork.com/cancer-management/long-term-central-venous-access) to my previous post:

"Device Care

Subcutaneous Implanted Ports 

Subcutaneous implanted ports require minimal to no care when they are not accessed. Subcutaneous implanted ports should be flushed after each use with heparin solution (3-5 mL; 100 U/mL), as well as monthly during periods of nonuse. Nevertheless, there are no prospective randomized data supporting the need for monthly flushing vs longer durations of time between flushing during periods of nonuse for subcutaneous implanted ports." 

 That's as precise as it gets...

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

I got this from the surgeon But did NOT state it correctly in my post. He told me about 2% result in a perforation of a lung which he said surpisingly is “Usually not a big deal”. He stated that something less than 2% can go into the heart. I interpreted that as 0-2%. So I incorrectly stated 2-4% can go into the heart. I should have said up to 4% penetrate the heart and/or lungs. It is extremely rare for it to result in any permanent damage. The biggest risk would come from the few docs who do not use a fluoroscope to guide the wire.

As far as placement goes, he recommended the left side, but not because I am right handed. It is because there is a bend in the artery when approached from the right. This means a greater chance of penetration of the artery wall. It also is more likely that the catheter will “flutter“ in the blood flow. He said it is considered harmless but it just drives some patients nuts. People who experience that phenomena usually are very eager to get the port out. Another consideration for me was sleeping which I do predominately on my right side. With splenomegaly and a port both on the left side I will find that old habit hard to change.

 

Evarista
Posts: 254
Joined: May 2017

At least that was my understanding...

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

It would never be put in an artery! I know the difference and apologize for using the wrong term.

PBL
Posts: 182
Joined: Jul 2016

... the catheter is supposed to be inserted into a vein (cephalic/subclavian/jugular). However, the most frequent complication is indeed catheter malposition resulting from accidental arterial puncture. I had assumed this was what you were referring to.

Cheers!

PBL

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

it was. Sorry I stated it so poorly. I get my port next Tuesday. I was thinking artery, even though I knew better, because some of my tumors are on/near my IMA. I go tomorrow for a nuclear imaging test to see just how involved the IMA is. Will have the results just after test is completed. CT looked like a go but my surgeon and onc want to see the detailed nuclear imaging before placing the port or beginning treatment.

PBL
Posts: 182
Joined: Jul 2016

So, then, you're having a PET after all?

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

Nuclear imaging (aka nuclear stress test) is a cardiac procedure to check for narrowing in major vessels around the heart.

https://www.mayoclinic.org/tests-procedures/nuclear-stress-test/about/pac-20385231

PBL
Posts: 182
Joined: Jul 2016

... and a symbol of harmony if ever I saw one!

Here's hoping for good news.

PBL

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

All heart tests now normal. Virtually no placque and good blood flow. That means I can get the port next week and start my infusions on 26th. I suppose thats good news. Not really but better than it could be. I am going to let my 5-year old Grandson give me a buzz cut! That way he will not be shocked by my appearance next time I see him. Have a great weekend all. I sure intend to.

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

The brand name is Medi- Port. I was out for almost an hour. It was painless at the time but I did get quite ill at home afterwards. It was probably side effects of the anaesthesia. It lasted about 3 hours and now I am fine. The beast is rearing its ugly head in the form of a noticeably enlarged spleen and beginnings of a distended stomach, exactly like round 1 6 years ago. I am waiting to begin therapy in about 12 days. Fishing is more important! Well at least its more fun - everybody has a good time except, hopefully, the fish! 

 

 

Evarista
Posts: 254
Joined: May 2017

Please take good care of that abdomen while you are fishing!  Have a great time.

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

i will be as careful as I can. The Doc says a couple weeks should not make any difference.

PBL
Posts: 182
Joined: Jul 2016

Enjoy the fishing trip.

Luckyp
Posts: 11
Joined: Feb 2018

Haven’t had this particular chemo but some of it was in my Epoch-r  wanted to comment that the port was a piece of cake and made the chemo process so much easier

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

yes, the port went well. Still a lttle sore and tender but everything is fine. I think it was a good decision.Thanks for your comment.

PeprmntPat55's picture
PeprmntPat55
Posts: 54
Joined: Aug 2016

Hi Shady Guy! I'm sorry for your situation. I was dx withNHFL stage 3B. None of my organs were affected. I did 8 rounds of Rituxan & Bendamustine. Day 1 was R & B, Day 2 B only.  First treatment I developed a nasty blood clot in my arm where chemo was administered. Before my next treatment I had a power port installed.  It was really cool the way it was done at the radiation dept of the hospital. I was put in a twilight sleep, took about 45 minutes. Went from there straight to my treatment. It was something to get used to at first but now it's just a part of me.  I would not want to go back to having my veins destroyed.  

Good thoughts for you as you begin this new journey!

Pat

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

i am sitting on the outer banks hoping to go offshore fishing but weather is terrible. should have visited the kids instead.

I begin treatments on Monday with orientation. Then 4 days of infusions. They told me on the phone today to plan on being there all day Tuesday thru Friday next week then returning in late April to do it all again. Infusions will take 7 hours per day at first but may get shorter in future rounds if I handle it well. I had thought they were only 3 days but the woman said I am on the schedule 4 days each round. The port is healing well and so far I am happy with my decision to get it. No need for blood clots and sore arms. Only bad thing is some pain at night and my chest is quite bruised.

Thanks for your comments and encouragement.

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

I've had my port 3 years now. My first cycle of R-Chop was without the port. It was put in before the second cycle. I wish there had been time to get it in before that first one but the Dr wanted to get started quickly since my lung was affected as well as having a large mass in the abdomen. I agree that the first few weeks it seemed weird but after that I hardly every think or feel it. 

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

my port will get its first test in about an hour. I had orientation yesterday and begin four days of infusions at 0800 today. Yes, it is indeed a 4-day cycle. 1st day is R and days 2-4 are Fludara followed by cytoxan. Hair will be history in 2-3 weeks. If anyone is interested I would be willing to post details of the entire regimen. Surprising they say that 4 years after finishing 26 R infusions, they treat me as if I have never had R before. Its a whole new ball game. Same players Demerol, benadryl, acetomenophen and first infusion 7 hours to reduce chance of allergic reaction. The Fludara and the cytoxan are 1.5 hours each and are given with an IV nausea drug.

Evarista
Posts: 254
Joined: May 2017

That was my position during my bald months.  Couldn't find any curly wigs anyway.  I did find it helpful to just get buzzed as soon as it start to go...Just too messy otherwise.  Hope your day goes easy. 

yesyes2
Posts: 581
Joined: Jul 2009

I've been bald twice in my life. CMF for BC and RCHOP for NHL.  Both times I completely loved it.  I found a sense of freedom and it was so much easier to take care of when your feeling tired.

Shadyguy, for many people Cytoxan may only cause your hair to thin but not completely fall out.  I do not know anything about Fludara but would be interested to hear about your experiences.  

Sending good thoughts on your first infusion.  Yes, they always set you back to zero when you re-take Rituxan.  I get 2 every 6 months and the first of the 2 is a long slow process, the second one is half as long.  Best of luck.

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

I was going to have my 5 year old grandson give me a buzz cut but I realized he is just not mature enough to be involved at this point. He sends me a very loving video every day from his Mom’s phone. I got my hair cut short and will just see what happens.

Yesterday was a difficult day. My FCR (for lack of a better name) is a 4-day cycle. Yesterday was day 1 which is dedicated to Rituxan. I was given demerol and acetomenophen orally then the new port delivered benedryl. Started out at 50 then adjusted upward every half hour. At 150 I started to experience rigors. The nurses called my onc (a truly great person) to the scene. He stopped the Rituxan infusion and gave me a second dose of demerol, benedryl and acetomenophen. That did not stop the rigors so he then gave me a steroid, cortisone I think, and I stopped shaking. After 30 minutes we restarted and everything was fine. In cycle 2 I will be premedicated to ensure it doesn’t happen again. It has been 4 years since my last of 26 infusions of R so I thought it would not affect me but I was wrong! The only remaining effect was a slight headache and sleeplessness last night, probably from the steroid. I basically feel fine now though I am a bit tired from lack of sleep.

Today is day 2. Days 2-4 are the same. It is supposed to be a 3-hour day. To start I get an IV called ketril to control nausea. That is followed sequentially by two one hour infusions. The first is Fludara followed immediately by Cytoxan. As usual they tell me everyone is diffent but I will probably not feel well. Apparently some patients breeze right through it while others are debilitated. I plan to be the former. Thursday and Friday will be a repeat of today and end round one of six.

theport is working great.

Have a great day.

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

Kytrile (sp?), Fludara & Cytoxin today with no ill effects so far. I get the same for the next two days then 2 1/2 weeks Off. Port is great!

PBL
Posts: 182
Joined: Jul 2016

Great!

I hope the sailing remains just as smooth all along. Take it easy.

PBL

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