Off to the races

ShadyGuy
ShadyGuy Member Posts: 756 Member

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!

 

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Comments

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    Something to look at

    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
    Evarista Member Posts: 325 Member
    Safe travels

    And be well.

  • Rocquie
    Rocquie Member Posts: 858 Member
    Shady

    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
    ShadyGuy Member Posts: 756 Member
    edited March 2018 #5
    Thanks Rocqui

    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
    PBL Member Posts: 333 Member
    ShadyGuy

    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
    ShadyGuy Member Posts: 756 Member
    Fludarabine (sp?)

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

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    Quick explanation

    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.

     

     

  • PBL
    PBL Member Posts: 333 Member
    edited March 2018 #9
    Port

    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
    ShadyGuy Member Posts: 756 Member
    Thanks

    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
    PBL Member Posts: 333 Member
    Port (cont'd)

    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
    PBL Member Posts: 333 Member
    edited March 2018 #12
    Flushing

    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
    ShadyGuy Member Posts: 756 Member
    Port risks

    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
    Evarista Member Posts: 325 Member
    Vein, not artery!

    At least that was my understanding...

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    100 % correct

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

  • PBL
    PBL Member Posts: 333 Member
    Of course...

    ... 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
    ShadyGuy Member Posts: 756 Member
    PBL said:

    Of course...

    ... 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

    Yes

    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
    PBL Member Posts: 333 Member
    So, then, you're having a PET

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

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    PBL said:

    So, then, you're having a PET

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

    No PET

    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
    PBL Member Posts: 333 Member
    Yet another beautiful bird...

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

    Here's hoping for good news.

    PBL

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    Good news

    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.