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Question about chemotherapy

Bermudagirl
Posts: 120
Joined: Jun 2012

Hello everyone,

Well we are getting closer to getting started on treatment. Dave was at Hopkins on Friday and had his radiation simulation done. We are still waiting on the tumor identification to see if he'll be in a clinical trial and what meds he'll get. As of now, radiation starts Tuesday July 17th, and I assume chemo will run concurrently with that. We don't yet know if he'll need a port. With one regime he'd have the 96 hour infusion and of course need the port, with the other protocol he would not use a port and chem would just be done in an IV through the arm. Can anyone shed some light on this for me? I think I'm just on overload and for some strange reason I can't seem to process this one piece. We go back to Hopkins this Thursday for the pulmonary test, and also are meeting with the chemo team to hopefully flush all this out.

To complicate things further, we learned that the PET scan shows he has an anyersum in his neck which will need surgery after all the cancer treatment is completed. Unbelievable! I can't even imagine going through another surgery...

Some of the discussions of late about the caregivers have really hit home. I have become so stressed and run down that i have picked up a respitory virus. I'll be fine, just need to rest a few days, but it hits home how we as care givers need to take good care of ourselves. Life goes on even if someone has EC, and I still have all the other challenges in my life to contend with in addition to Dave's cancer. I had an appointment with my therapist yesterday and she helped to show me how I need to just take it one day at a time and not obsess over things I can't change.

But back to my original question, if anyone can help me out with the chemo protocol I would be most appreciative!

Sandy

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

My dad is on his second round of chemo now. His first time he did radiation and chemo concurrently. This time he is having an infusion, then taking a chemo pill (Xeloda) for 21 days after the infusion. Then another infusion, more pills, etc. He is on his 4th of 6 treatments this round. He did get a port and is happy about that decision. It has made giving blood, getting infusions and any other iv things so much easier.

About your health... be careful around him if you are sick. My dad's immune system takes a HUGE hit every time he gets the chemo infusions and if myself or my kids are even the slightest bit under the weather, we STAY CLEAR of dad until we are better. Make sure you are aware of the health of your visitors or anyone that comes in contact with you or him so he doesn't catch anything.

Hope this helps!!

Take care!

~Jayme
Dad Stage IV EC since 2010

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Sandy, I was told when I took chemo that a port is a must, because the chemo is too hard on the veins. After surgery my port was removed because of complcations so I was told I couldn't take anymore chemo.
Being a caregiver is very stressful.It's important to take care of yourself. I have been a caregiver, but not for my husband. I can imagine the stress level is even more elevated.
Don't ever feel quilty over your feelings. They are natural. Your world is being turned upside down. Your therapist is right, You and Dave need to concentrate on one day at a time. I know from experience it is not easy. EC is a roller coaster ride, and made even worst by the other things that are happening.

Take care,
Sandra

monica_sss
Posts: 57
Joined: Dec 2011

Hi Sandy,

My Mother also went through Hopkins (Dr. Kelley & Dr. Hales). She didn't qualify for the clinical treatment, so we went the other route with weekly chemo for 5 weeks. We started out with IV only, but as she became more dehydrated, and poked by needles more often, it became hard to get a vein.

Eventually she had a PICC placed, and this helped with all of the difficult veins/IV issues. What stinks is that the folks down in phlebotomy won't use the PICC line, only an RN can -- so when he gets his weekly blood test he'll still have to be poked for that. It was a big relief to my Mom to have the PICC line (slightly more maitenance than a Port, but not much). She was able to take chemo through, draw blood through it (by an RN) and eventually she received nutrition through it via a TPN 18-hour bag. It was a lifesaver.

Mom was stage IIIA diagnosed in 12/2011, Chemo/Rads - Jan-Feb
Transhiatal Esophagectomy April 2012

mmr19
Posts: 88
Joined: Feb 2010

Sandy-
My husband Lou has had a port since he was first diagnosed in Dec 2009. ( Stage IVb). He was in the hospital at the time and we were told he was going to have the port inserted. Neither of us recall being 'asked' if he wanted it or not. (Then again, those days were such a whirlwind, all we remember hearing was CANCER.) But maybe it wasn't an option because of the chemo he was to receive also. He has been getting chemo now for over 2-1/2 years and has said time and again how glad he is to have the port. Especially when he sees someone being worked on by a nurse who is struggling to find a vein.
He has had no problem with it whatsoever.

Also, I agree with the others that all precautions must be taken if someone is sick. When the cancer patient's WBCs (white blood cells) are low they run a high risk of catching anything.

This is our experience and as you know, everyone is unique in their own situation.
Best of luck to you.
Marta

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Sandy:

Don has the port and has had no trouble with it. We were told by two of our nurse friends that this port was a pretty nice Christmas gift. It has been - we've heard the stories of people who received chemo through the veins and I'm so glad Don was offered the port.

It was put in quickly on an outpatient basis and again, no issues whatsoever.

Hugs and FEC,
Judy

Freida
Posts: 191
Joined: Nov 2011

Bill had a PICC line. The oncologist at M D Anderson said that from his perspective there was not much difference between having a port or a PICC line and it was out choice. As far as I recall we went with the PICC line because it could be scheduled more quickly - that same day in fact - and that meant the chemo could be started more quickly. He had a double lumen PICC line but most of the time they used one. Our oncologist was adamant that blood tests not be drawn through the PICC line as it may increase the chance of infection, so Bill still got stuck for blood tests. The PICC line required a lot of caretaking on my part - both lumens had to be flushed daily with heparin (and weirdly heparin for this purpose is not covered by insurance) and I had to change the dressing weekly. For this I had to go to 2 classes to learn how to do sterile dressing techniques and then pass a test where they watched me do it. The heparin flushes were easy once I got used to it. Never got comfortable doing the dressing changes. From what I have heard of the Port, it sounds slightly more invasive at the outset, but a lot less hassle over the subsequent months of treatment. Bill was thrilled when they removed the PICC line.

As far as chemo, Bill had 2 phases as he is not a surgery candidate due to comorbidities. The first 2 months he had a cocktail of 2 drugs every other week by infusion in the hospital (taxol and carboplatin) then wore a pump for 48 hours with continuous 5FU. The second phase he had the same taxol and carbo every other week, but had the pump 5 days a week every week during radiation. They wanted the 5FU in his system when he was having radiation.

Make sure you take care of yourself while you are taking care of Dave. The stress can really take it out of you.

Hugs
Freida

Bermudagirl
Posts: 120
Joined: Jun 2012

Thanks, William. I am just getting ready to go home so will read your comments a bit later tonight. I do agree with you all about the port,so will mention it when we next speak to the docs. I had a port with my Hodgkins and it was fine. And since I don't live with Dave I would be very leery of someone other than myself cleaning it. Thanks again, you all are lifesavers, as always!

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

As everyone has said the port is better. I had one for over 2 yrs and it was a godsend because your veins get very small with dehydration which comes with the chemo and also helped with the infusions of fluids I got concurrently with the chemo. Good luck, but sorry to hear of so many complications. HOpe it all gets settled and your hubby will be on his way to starting the treatment. take care,
Donna70

Bermudagirl
Posts: 120
Joined: Jun 2012

All of your thoughts and comments are most appreciated. And William, there will be a special place in heaven (not too soon though!! :) :) ) for you for all the work you do to help all of us who are struggling with this disease.

I am going to ask this week if Dave can have a port put in. I agree that it makes life so much easier. The funny thing with mine is that I got sick towards the end with my chemo, and to this day just smelling saline brings back memories of that dang thing and I feel nauseous! :) But it is a life saver as far as ease of administering chemo, blood draws, IV's and the like.

William I have forwarded your lovely response to Dave, and to my mom and several close friends. It really gives a time line of what to expect, and for that I thank you from the bottom of my heart.

Dave is still upbeat; he is naturally a glass half full person, and sees the good in most everything, so that should hold him in good steed.

I will of course keep everyone posted. And I believe each day I need to say the serenity prayer. i am also an Episcopalian, and I need to pull out my prayer book and lean on that. I did for my own cancer, but sadly have fallen out of habit. Funny how we sometimes lean on God only when we are in trouble...

But again, thank you ALL!

Sandy

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