I just returned from a visit with an oncologist to start the the ball rolling regarding Provenge treatment. Everything went well, insurance will cover it, my condition says it's time for it, etc. All of a sudden she dropped a bomb on me. She told me that I would have to get a port placed in my chest for the six weeks during the procedure. She also stated that I would not be able to lift weights while the port is in my chest .Well I have been lifting weights for nearly 50 years non stop and having to quit for six weeks would mentally destroy me. The veins in both my arms are great, prominent, etc. I see no reason they can't be used. Has anyone had a chest port and done weight lifting, etc? I know this sounds absurd but I'm ready to cancel my provenge treatment. This port issue has my stress level to an all time high. How many of you went through Provenge treatment and had the veins in your arms used?
I also have been lifting for 60 years and it has helped eliminate side effects of medication. I went in for pre evaluation of my veins at the center that will draw the blood. No reason to have a port. A port can get infected. How does doctor know the condition of your veins. Did she look?
No she didn't bother to look. She mentioned something about a vein collapsing and the insurance "freaking out". I have Medicare a and b. I also have Blue Cross. She told me that a local Red Cross center will draw the blood. Maybe they will decide port or arm veins? Did you have the provenge procedure done? Also, was your pre evaluation center a Red Cross facility? Thank you!
I had the chest port, but I don't lift. It didn't really restrict other activity. Even vacationed with it. In my case, left arm vein was not large enough. Good veins should eliminate the need. Have you talked with the folks who will take the blood? In my case, that was the Red Cross. They made the decision.
No, I haven't yet been in contact with the Red Cross who will take my blood. I'm hoping that they will tell me I don't need a port. The veins in both my arms are in excellent "shape".
I suspect that the hospital that will be putting the concoction back in me is looking to cash in on the minor surgical procedure that involves putting a port in. They never as much looked at my arms. I have typical weight lifter arms, meaning prominent veins large and numerous in nature.
Thanks for the reply, I always look forward to reading your extremely knowledgeable posts.
I had Provenge in Oct 2016 under the auspices of UCSF. They made all the arrangements, etc. The leukapheresis process happened at an American Red Cross blood donation center in Oakland, CA. Before the procedures, the Provenge people shipped me Patient Information paperwork, and also a promotional backpack and a water bottle and some other stuff for promotional/comfort purposes. It was good reading, but most of it can be left at home.
I did not have a Port or PICC line installed. Neither did the other men who were there at the same time during sessions. My veins are average to just below average, but they can be found. I always hydrate well beforehand. If they cannot establish both the lines and keep them going, though, they will abort the procedure and reconsider a PICC line or Port. They do insist you urinate just before they start. (If you should have to urinate again during the procedure, they can bring you a bed urinal bottle while you remain hooked up and pumping. They will help you so as not to disturb the lines in each arm, or somebody who may have come with you can help you.) I had some blood pressure-type cuffs put on my upper arms to help make them stand out during initial connection and the rest of the procedure. The machine will not work and starts beeping if your flow stops or gets too low. During my first session, they reset the larger needle in my left arm once, and moved the return line in my right arm from my inner elbow to the back of my hand, to maintain flow.
The entire procedure took at least 3 hours, once actually hooked up, on a reclining couch. The first procedure takes extra time beforehand for paperwork and questions, so arrive early that day. Some places have music or movie tapes that you can watch, some others might not. You are not strapped down or anything, but you can't really move your arms or bend them to do typical reading or other activities, either. Most of the time you are just squeezing a little rubber ball or something with your left hand, keeping the circulation going.
Most men do the leukapheresis part with no problems at all. I was one of a smaller percentage (perhaps 1 out of 15-20?) who did experience some immediate procedure side effects. The machine automatically adds a citrate anticoagulant to the blood that is circulating into the machine's internal parts to keep them working properly. When this comes back into the body via the return line, the citrate can do some real-time chelation of serum calcium, which would normally be almost immediately corrected by the combined reactions of the liver, muscles, blood, and bones. In cases where this may not happen quickly enough there can be side effects.
I experienced tingling lips and a numbness sensation of the lower face and nose during the first hour. Every 15 minutes or so your technician will ask you how you are feeling. Tell the tech exactly what you are feeling each time. Anyway, as soon as I reported anything, they gave me 2-3 Tums (which I know takes some time to be absorbed orally, but it's better than nothing).
During the second hour I developed a sensation that the entire couch under me was mildly vibrating, when it was not. (More Tums). During the third hour I felt like I was "buzzing" all over my body, and just tried to relax nevertheless, until it was done. (Even more Tums.)
Be prepared to hang around and rest a while before you leave. Maybe have some juice. Have somebody else drive you home. Get something to eat on the way home. Take it easy.
A few days later you go to your regular infusion Center and get the little bag of Provenge treated cells slowly returned to your body, which is often just fine, but they monitor folks for any immediate reactions, anyway. Thus ending Round One. I felt really tired and fatigued starting about 36 hours after the reinfusion, lasting for 2-3 days, which I took as a sign that the Provenge was doing something with my body's immune system, and, hopefully, some cancer cells, too. A couple of weeks later, you do Round Two.
When I did Round Two my citrate toxicity reaction during leukapheresis was stronger. I was eating Tums every time I turned around. About 2 hours in I also had a massive hot flash and a sudden vasovagal reaction where all the blood drains away from your head and you get white as a sheet and feel faint. The techs rescued me with quick action to lower my head and raise my feet, and to apply ice water compresses while I was still hooked up to the machine. I was still tingling and buzzing and felt like crap, but I did not pass out, and continued on with the procedure. (If I had passed out, the protocol would have forced them to abort the procedure.) Meanwhile, the guy just next to me, doing the exact same thing, had no side effects, whatsoever. None.
My Round Two reinfusion several days later was also pretty uneventful, until I left to get on the elevator and my heart (for no immediately discernable reason), decided to go into A-Fib with Rapid Ventricular Response, and I got to take an ambulance ride and spend 8 hours in ER to get it to converted to normal rhythm, thankfully, just using some of the usual drugs for that condition.
The Round Two reinfusion, itself, went fine, too. However, a couple of days later I developed a blood clot and phlebitis in the same peripheral vein in my left inner elbow that had been taking all that large bore needle abuse for 6-8 hours during the past 3 weeks. More tests, etc. and eventually the blood clot cleared after a few days of hot compresses.
Long and short. I decided to stop at only 2 Rounds of Provenge. I'd given it a good shot, and I was reasonably confident that it had had enough of a chance to go on and do its thing over time, despite not having any guarantees for any major PSA response.
Again, these were just my experiences. Many others have no problems whatsoever doing Provenge. BTW, I also have Medicare and a Federal Retiree version of Blue Cross. Provenge was on my Blue Cross drugs Formulary. The doctor and the Provenge people handled all Insurance PreApproval stuff up-front.
Thank you so much for taking the time to reply in such a detailed manner. Your information is invaluable. I also have Medicare and a Federal Retiree version of Blue Cross.,(ex federal employee). I'm doing everything in my power to avoid a port even if it means starting the process over at another hospital.
Thanks again, words can't express the help you have given me.
I'm having my first leukapheresis on June 12, so I'd like to add my thanks to nameless9999's for your detailed description. I'm very sorry you had such a tough time. It's really good to know in advance what could happen.
It's very useful to know that I can hydrate well & yet be bailed out during the procedure, since I had a spinal-cord compression from a PCa tumor, & I experience urinary urgency.
I'm trying to figure out if I really have to ask my wife for a ride home, which means she'd either have to stick around or "commute" twice (1 hour RT from San Leandro to the same Red Cross you went to). Do some guys bring food to eat during the recovery time? If I did that, & maybe also stopped at a restaurant near the Red Cross, wouldn't that be sufficient so I could drive myself?
I guess the music & movies at the Oakland Red Cross are set up for individual listening/watching, right? Is bringing an iPod so I can listen to my own music an option?
Did they have you take calcium in the days before your sessions? Is bringing calcium an option to the Tums? I hate to take sugar, especially if it isn't even fun.
How long did they keep you for your first infusion? Did you feel fine to drive home that time? I have to go to Kaiser Santa Clara, & would really like to spare my wife from THAT commute, plus being stuck there.
I will only speak now for the ARC location in Oakland at 6230 Claremont Ave, where I was scheduled for the Provenge leukapheresis sessions by UCSF. I was scheduled there at 7:30am one time, and 7:00am another time. If you are driving, there is plenty of parking in their lot at that time of day. If you get there really early and the door is locked, a guard or somebody will let you in to await the leukaphersis techs' arrivals. We drove from a longer distance away, and my wife wanted to come and stay the whole time. She brought a book, and drove us home. That location is also .4 mile or an 8-10 minute walk from the Rockridge Station BART station. If you feel like hanging around the area for lunch afterwards, there are places to eat nearby. Check out Google Maps or your favorite App for such things. You are so close, it might be easier just to go home.
You can count on being there at least 3 1/2 hours, of which you are hooked up for 3 hours solid, if all goes well. Wear comfortable clothes. Slip your shoes off if you wish. Bring your tunes if you wish. The techs are very helpful, and will help you with headphones, warm blankets, etc., at any time, should you be there by yourself. That location had a small collection of old movies that could be viewed on a little machine that sits right in front of you, but I never saw anybody using one. I would have found a book or a Kindle difficult to use while hooked up to the two lines. Someone with a Port or PICC line would probably be able to swing it. You could always take your stuff the first time, and just try it, anyway.
That location has some typical complimentary light snacks and juices in a recovery area on the way out. I found it helpful to hang around for 5-10 minutes before leaving, just to make sure I felt steady enough after the procedure, etc.
On your way out, don't be surprised to see a guy waiting in the hall, poised to pick-up your little amber colored bag of cells and immediately take it for expedited shipment to the Provenge processing facility in Southern California.
You live close enough that you could call and wait for a pick-up, should you for any reason decide not to drive or commute home by yourself afterwards.
One last note as to potential side effects during leukapheresis procedures. This same topic came up during a side session at the 2016 PCRI Conference in Los Angeles. More than one person suggested taking some Tums or other calcium tablets the day before and a few hours before arriving for the procedure. The Provenge folks also sent an electrolytes sport drink type powder in their Welcome/Comfort Kit. I did both, and I would do both again. A couple of older men (late 70s, early 80s) reported that they had the even rarer citrate toxicity side effects of getting muscle cramps in their legs during the later parts of their leukapheresis process. I did not actually get any cramps, but the whole body "buzzing" I felt during the 3rd hour could have been a precursor to that kind of thing.
Odds are, everything will go just fine for you during your up-coming leukapheresis procedures for your Provenge, and you will have no problems at all. Easy peasy. (Although your left forearm might get a little tired from squeezing the little rubber thingee in your hand for so long. Ha. Ha.)
Thank you very much for taking the time to post a nice, long, helpful answer for me.
I have 1 PM appointments, which will work better for me since I don't like to get up too early, & I do like to eat a huge (but healthy) breakfast.
I would use BART, but I have a very sore ankle. I'm very familiar with the North Oakland/South Berkeley area, including several tasty Asian restaurants. I'm sure I'll be hungry, & I can wait out rush hour in a very pleasant way.
I'll bring some organic fruit, nuts & seeds so I can stay away from snacks that are likely to be sugary or to quickly convert to sugar.
My wife put the dates in her calendar to drive me, but your description helps me think I'll do fine myself. I'm back & forth from Oakland & Berkeley to San Leandro, where we moved from Oakland when we retired, a couple of times a week on average, so I'm comfortable with the drive, & have more than one route to choose from. I'll just ask my wife to be on standby in case I unexpectedly don't feel like driving. Usually I look forward to it.
I'll bring my Kindle or something to read, but it sounds like I'll only be using it during recovery & my restaurant meal.
I'll follow the advice about calcium in advance. And I think I'll get my left arm prepared by squeezing a ball at home.
Your Red Cross blood center makes the sole determination as to whether you need a centeral veinous catheter, not the oncologist. Most men at my RC blood center did not need a CVC. If you never have trouble with blood tests, you probably will not.
The insertion and removal of the CVC is an easy process if you do need it, fully covered by Medicare. T, you would not be lifting while you had it.
A tougher part of the Provenge treatment prep is getting off prednisone if you are taking Zytiga. If you do take Zytiga, start to get off the Zytiga and prednisone at least four weeks before your first Provenge treatment,and stay off them or six weeks after your last Provenge treatment.
You will want to dress really warmly for the leukaphereses blood draws. A ski hat, ski gloves, ski socks, and heavy sweater will make your experience much more pleasant, even if it is sultry outside. And start the calcium supplements early in the blood draw to avoid he shakes.
You might ask your oncologist to add Leukine to your treatment for about six months after taking Provenge. Leukine increase thenumbe of white bold cells, and Dr. Myers says the two are very synergistic.
I'm told that once you become castrate resistant on ADT, provenge is the recommended next treatment , not Zytiga or Xtandi . Were you told something different or is this a new protocol?
I became CR in 2013 with several bone and lymph mets. My CRPC seemed to be growing rapidly. Xtandi was new and proving able to put about 1 in 5 men in remission so that was my oncologist's choice. Xtandi stopped the progression of new bone mets, but the side effects were bad for me.
In 2014 I started with Dr. Charles Myers and changed to Zytiga specifically to cure the lymph mets, which it did in six months. With lymph mets gone, did Xofigo in 2014-15 and bone mets were much reduced in number and intensity.
In 2016, with bone mets lessening, Dr. Myers recommended Provenge. Bone mets have continued to disappear.
I am told that Provenge cannot stop rapidly growing PC, where Xtandi and Zytiga can, and did for me.
And I believe Xofigo is a great treatment to lessen bone mets and bone pain. Again, it worked for me.
And I am glad I had Provenge in late 2016. These treatments were good for me in that order. There are great treatments available to you.
Thanks for the explanation. I'm Gleason 9 . In '13, Post RP pathology found SVI, EPE and positive margin at base. I then had SRT and ADT in '14 and ADT3 and IMRT to pelvic lymph nodes in '15. After PSA rose on ADT vacation I now I have a spot on right femur so I'm back on ADT3 and will have SBRT to the femur. I'm also going on xgeva to hopefully slow down further bone mets. I expect to go down a similar path to yours at some point so I'm doing due diligence now.
No longer necessary to stop zytiga and prednisone. My doctor said stay on it and I called Provenge and spoke with pharmacist and he said is is alright to take prednisone with Provenge.
I've been living with a port in my chest for two years and expect it will be in place for another year or more. It is for chemo for another cancer (my prostate cancer has been gone for 11 years now). The port has been a total non-issue except that folks who see me naked (or shirtless) assume that I have a heart pacemaker. My partner has one of those so we can do show-and-tell about the differences. Anyway, back to the subject.
The port sits just under the skin, about the size of a stack of three $1 coins. It is a little loose and moves a bit with your skin. A thin plastic tube runs from the port into a nearby vein and then inside the vein down to where the vein attaches to your heart. Clearly you don't want to be yanking on those fragile connections, a tear in there is not an option. For a skinny old guy like me that's not a problem -- but even I was warned about any strenuous moves with my arms. For a lifter like you, I expect pectorals would move about enough to give those connections a good yank. So I fully understand the limits on your activities; indeed I'd worry a bit about just flexing even without weights. You have a special situation so really should talk to a surgeon who implants ports, s/he can tell you far more about all this.
Back to the first question, why a port anyway. As explained to me, many times, by the phlebotomy nurses at my cancer center the chemicals we receive are quite corrosive of the vein tissue, especially when concentrated. Some folks still have their arm veins used, and the nurses are always checking for evidence of damage there. With the port the drugs are dumped directly in the great pool of returning blood from all over the body and diluted. Then pumped directly into the arteries with no veins involved. The chance of corrosive effect on tissue becomes negligible.
I have a port in my chest and was never told not to lift weights, which I do. I have had a number of doctors over the last seven years, some of which have told me not to exercise. I have exercised and lifted weights the entire seven years. In fact, I believe exercise is responsible for my existence today. Yesterday, I skated (in-line skates) 18 miles in under 90 minutes. On rainy day I'll lift weights, well sort of, i have a bow flex machine. If there if one thing I have learned over the last 7 years living with PCa, is that your doctor does not know best.
You're sure right. No. One knows your body better. Just get familiar with what blood markers and imaging means and use them as tools along with the doc.
You are so right. I'm on my fifth doctor and the first that is open minded. I'm the one that ultimately decides what drugs to take based on my body, test results and studies I bring to her attention.
Ask you doctor to provide an explanation. An explanation you and I can understand. This should eliminate your stress.
I did Provenge last may. They took blood from my arm then put it back in three days later. I went to blood clinic on Friday and back on Monday for what looked like a bag of lemon aid . 3 treatments a week a part. Now I'm on a Xtandi trial, PSA Is 0.07. I have never heard of a chest port.
I'm a couple of weeks from my first appointment. I haven't received a packet from the Red Cross yet. The Red Cross is in a convenient location for me (unlike the infusion center), so I'll have no trouble getting a vein exam done. Did they tell you to have a driver?
I was questioning Hermithound, who said his treatments were a week apart. My guess is he meant 2 weeks.
I have a chest port and I was told that they could not use it for the collection process. They use it for the infusion.
That sucks! I read through the posts here, and there's no reason the can't use your arm. I'd be pissed off too.
Joe
in reply to
Joe,
I'm guessing it's just another way to suck more money out of my insurance. When I told her I had Medicare A,B, and federal Blue Cross, she started drooling and dollar signs were spinning in her eyes. Sometimes I think the doctors are worse than the cancer itself.
When I look at my accounts from Medicare & Blue Cross and note the percent that gets discounted from the billed cost it looks more like the doctors would be turning down patients like us when they rarely earn 30% on the dollar. Seriously doubt that Medicare causes any doctor to salivate.
I've been lifting for 60+ yrs. Somtimes its good to give the body a rest every so often to heal any micro injuries from lifting. I know 6 wks ls long but half that is'nt so bad so l'd ask if dynamic tention all muscles except pecs ok. Just for maintenance. Hope this helps. It would me if I had no other choice and maybe you can expand on it. Where there's a will there's a way. This is also my back up if ever bedridden
Tell the doctor you won't lift weights as long as she doesn't zumba and yoga. Nothing like feeling those endorphins after working out. Wish I could still pump iron.
when i started Chemo I asked about the port and the oncologist did not want to have it installed in me till, he saw my veins after two chemo sessions. I then had the port installed. I think the port is great as they no longer have to use my veins. That said I don't lift any significant weights and I can't say what effect the port would have. I do not think if you have good veins which don't leak after the chemo treatments as mine did that you need the port.
I went for the first lukopheresis blood draw 3 weeks ago, and nurse plugged into my veins, but blood would not flow consistently...she tried everything, but no good....wasted one hour drive for luko......just got a port installed, a nuisance to sleep because I don't want to strain it, so I can only sleep on my left side......biggest problem is I don't feel safe playing golf which stresses the shoulders and chest....so can only do chipping and putting for 6 weeks.....bummer.......
DON'tT get a port if you have large veins & many of them.
Wait and IF you need one down the line you can get it done.
Putting in a port is not brain surgery. It's an outpatient procedure. I've put in many of them in my surgical career. A 20-30 minute procedure under local anesthetic (barring some weird vein anatomy. .
patandemma,
Thanks for the reply. I do have have large veins & many of them. If for some reason they force me to have a port put in, What are your recommendations regarding weight lifting while a chest port is present? Thank you.
Go to the Red Cross for a pre-evaluation. Also ask for a second opinion if they say no. One nurse had trouble getting it going; another had no trouble at all. Infusion is routine and takes about an hour.
Everyone's body reacts differently, and everyone has different priorities. I control my health care, carefully hire a Dr with expertise to be a member of my care team. (and fire Drs if needed.)
We talk to understand to be on the same page to max my care safety and effectiveness. I ask before I second guess, and don't hide things from dr since unknowns can increase my risks.
I worked in surgery and saw Mediport advantages, though they are often a choice. Ports send injections directly to the heart resulting in rapid dilution and faster access to the body. Ports decrease IV access pain, risks of infection due to a weak immune system, and possible vein damage from long-term and/or repeated use. My elbow vein is the least sensitive of all. Knocked on wood, twice!
There's no general need for a chest port, and as others have said, you should avoid it if possible -- much greater risk of infection and all of the other discomfort. You should contest this, find a different doctor, or even contact the Provenge people to ask for advice. Your doctor's discomfort does not supersede your own! If there is a medical reason, like hard-to find veins or small veins (the procedure uses bigger needles), that's different, but just as a process, as many have said, not necessary.
One note -- you cannot sleep during the leukapheresis (you have to keep squeezing the ball to keep the blood flowing). My husband thought he might get a nice nap in . . . A laptop or pad with a movie is probably your best best for the 3 hour procedure.
Lastly, my husband did well with the procedure -- until the last one. One of the noted side effects are "flu like symptoms." After #1 and #2, he was fine. #3 -- he got severe flu-like symptoms and went to ER. They worked him up for sepsis or other issues, but it was just the Provenge. Weird for it to be third time only (usually it occurs with the first one). Just FYI - the reaction can happen any time.
Good luck with this, and working out a good comfort level for yourself.
Thanks for taking the time to share to share your time and knowledge, much appreciated.
I had Provenge and they used veins in both arms. Are your veins "fragile" that they may not take the 17 gauge needles for the Leukapheresis process of the blood draw? The infusion is a standard IV catheter.
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