| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I had a port and it worked out to my advantage. A port wouldnt be necessary for only getting radiation. A port would be for a patient getting chemo along with radiation. At least thats what I think David meant. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | Yes, Monday is supposed to be about 3 hours. Do they usually do the anti nausea and Benadryl the first time. What's the Benadryl for. Isn't that an allergy med?
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I was told the Benadryl was for any alergic reactions I might have. I had none but loved the Benadryl. When they started that it was time for my wife or other caregiver to head off and get something to eat as I was going to sleep for at least an hour.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Jenkesmom
If you are going with the cisplatin, taxotere, and 5FU, expect to be there a lot longer than 3 hours. Alex and I went through this identical induction. In Australia, there is quite a rigamarole around the cisplatin which I assume also happens in the US. Besides all the anti-nausea and anti-inflammatory meds that go through, there is also a lot of fluid and Alex had to pee a decent amount (less than a litre but right up there) before they let him out.
They also decided that the first round, Alex should stay overnight in case there was a reaction.
My recollection is that the cisplatin alone was around 4 hours by the time they had done blood tests, hydration, pre-meds and then wait for Alex to pee. Taxotere was about an hour and 5FU was a doddle - hook it up check the flow and off you go home. We had to go back at day 2 for a refill as the casette that held the 5FU was old and small. This may not be required for you.
The order for the day was sign in at 8am and get blood taken. Present to cancer day centre (12A) get an apple juice out of the fridge for Alex (to help with the peeing later). Chat to the nurses about health, weight diet etc until bloods came back (about an hour). Get hooked up to pre-meds, and taxotere for about an hour, do hydration via IV in addition(1 litre) to 6 tetra packs of apple juice orally then cisplatin, then pee. By this time it was around 2-3pm. Hook up to 5FU out of there at 3.30 and try and beat the traffic.
Alex was very very scared before his first chemo and could not even read the pamphlets they tried to give him. The next morning he was literally bouncing off the walls. When asked how he was feeling his reply was that he was feeling like a "box of birds". I remember it well because I had never heard him use that expression before.
I think a combination of relief, hydration and the knowledge that we were doing something to fight the cancer contributed to his well being. This lasted for a couple of days before his lung collapsed (separate to the cancer but possibly loosely related to the chemo). The expected effects from the chemo started at the end of week 1. Thick stringy mucous, nausea and bone deadening fatigue. Lasted a week and then started feeling better for a week. And then start all over again.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | Thank you Karen. That's exactly what he's going to be on. It sounds like a much longer process than what he is expecting. He doesn't seems to think I need to be there for this one though. I'd like to go just because he doesn't tend to get the information I want to know about. However, I also need to save my time off of work for when he really needs my care later on.
As far as the side effects, I know each person is effected differently but his doctor seems to think it's not that awful. I have to ask myself, "not that awful in relation to WHAT?" I went through all of this with my friend who had stage 4 breast cancer and it is pretty much as you describe. Ok for a few days after treatment, then very fatigued and nauseous. Each treatment after got worse because she wasn't back to normal before the next treatment started and she ended up with a new side effect each time.
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Simon had induction chemo followed by Radiation with Erbitux. He would tell you that the induction chemo had it's moments but was very manageable. It was the radiation (maybe in conjunction with the Erbitux) that knocked him about. He didn't have a port, and probably should have. I don't remember anyone suggesting it. He had a PEG, didn't want to get it, but his treatment team gave him no choice. It was put in before radiation started and he says he couldn't have gotten through without it.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Jenkensmom I would recommend that you go with him the first time and tell him it's for you not him. He might be trying to protect you and this is actually not very productive. Alex also tried to block me until he understood that it was as much for my peace of mind as his. Once he realised he wasn't being a burden, and he also didn't have to put on a brave face (got to the point where he couldn't anyway), he was ok with it (that and the fact that he finally realised that I wasn't going to back down AND I was holding the car keys ). Afterwards, he was truly appreciative (I think). Alex was unable to take a single thing he was told on board that first day. I took over the logistics including talking to the ancillary staff and he concentrated on himself and getting better. I went to all the chemoradiation days - just to make the day go by faster for Alex and to keep in touch with the cancer co-ordinator, dietician, and other ancilliaries. I only went to the first induction chemo and for the others, just settled him in and left. It turns out that Alex was hospitallised for most of his induction phase so it was often a case of visiting him on chemo day until the first bag went up and then leaving him to it. I also worked full time during the whole thing although I took an awful lot of time off between one crisis and another (only indirectly chemo/cancer related). The interesting thing that I find is that at the time you wonder if you are strong enough to get through it and is it all worth it and afterwards you feel like it wasn't so bad. Quite a strange phenomenon - bit like having a baby, going through all that agony and then forgetting the pain because the outcome outweighs everything.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Great info Karen brought up! Definitely go with Paul the first time! It will help you both remember later what was said by the doctors or what exactly went on that you can discuss later. You can take notes, get names of people involved with his care or help your husband remember some of the good points or important things to remember. My son (Paul) did not have chemo but I went to all his Radiation Tx and appointments with the doctors. Being busy and involved with your husband's care will help you to have less time for your own anxious moments and more time for the closeness and good moments you can have with each other.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Christine,
Re my post, I'm not sure that even those that "only" get radiation wouldn't benefit from a port because I'm not sure that the chemo is the sole culprit in producing side effects that lead to the conditions that would benefit from having a port. Weight loss, dehydration, malnutrition and nausea are all side effects of radiation and having a port to administer IV's would certainly help.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | I'm going to go with Christine on no port for "only radiation" since David's example speak more to reasons for getting a feeding tube. Of course, if you don't get a feeding tube, then a port may be helpful. This will be my third round of radiation and I have never needed an IV any of those times for anything connected to radiation, only the chemo. The chemo does require IV to get and that's where a port could be handy. Weight loss is addressed by a feeding tube except for those who need parental infusion thru the veins - very rare so no need for a port there. Dehydration is easy enough with water in the feeding tube or even a nasal tube. Same goes for malnutrition. Nausea may be helped by an IV Heck even this time around, I'm passing on a port despite getting chemo. My veins have fully recovered. Ports are not problem free and I don't see the potential benefit outweighing the very real routine risks (pain, bruising, or swelling plus infection and bleeding)/ Plus with my luck I would get one of the more serious but very rare Potential complications of a port internal bleeding, nerve damage,collapsed lung, fluid build up around the lungs, blood clot formation, and accidental cutting or puncturing of blood vessels.) Heck I already am in the 5% minority for whom Erbitux does not work and the complication rate is about 10% for ports.
Last edited by Charm2017; 09-24-2012 09:10 AM. Reason: toned it down
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
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