Oh Lucky Me - Reacting to the Huber Needle - Bard Power Port January 3 2013

We discovered that I'm reacting (allergic) to the padding on the sterile Huber Needles used for my new Bard Power Port. 

I'm going to have to see if they can get the un-padded Huber Needle that I used at the University of Colorado Hospital (below).

Bone Marrow Plasma Cells down to 40 Percent from 60 Percent - January 2 2013

Chilly drive to St. Luke's Hospital MSTI, Twin Falls, Idaho with temperatures hovering at MINUS 12 degrees.  However, the roads were dry, skies blue, with sunshine.

Had blood drawn from my new Bard Power Port for the first time - all went fine except for the adhesive dressing they used to cover the Huber Needle access - which itched me. They took it off and replaced it with my Durapore silk tape.

Saw Dr. Padavanija and she had my bone marrow biopsy results from 20 Dec 2012. My plasma cell concentration had decreased from 60 percent (17 Oct 2012) to 40 percent after 2 cycles (a cycle is one month in duration) of carfilzomib/dex/revlimid 10 mg. She was able to speak with Raphael Foncesa, MD at Mayo Clinic Scottsdale, AZ during my appointment to get recommendations on how to proceed. Dr. Foncesa said he was hoping for a better response and now wanted to add Cytoxan to the carfilzomib/dex/revlimid and repeat bone marrow biopsy after 2 cycles.

So, off to the infusion room I trotted. I received the bone building medication, Aredia first at 30 mg vs the 90 mg that I had been receiving. I'm hoping this will reduce or eliminate the flu-like and tiredness that the higher dosage has caused. I have Terry, a 50 year old man from New Jersey who commented on my last Aredia administration to thank for the decreased dosage and the Lancet article supporting its use. Thanks Terry! PS I was born in New Jersey.

RN Brittany gave me IV Aloxi as a pre-treatment for the Cytoxan. Then, I got my 20 mg of Dex IV. Both Dr. Padavanija and Dr. Foncesa are in agreement that I can take more Dex during the week - I will start at 10 mg about 3 days after the 20 mg dose - this should help my tiredness.

I spent well over an hour on the phone with my specialty pharmacy trying to get a refill on my Fragmin 15, 000 units pre-filled injections...this does NOT make me a happy camper!

I got my first Cytoxan dose at 500 mg. I got it IV today, but will be taking it orally once my insurance approves it and it is delivered.

I arrived at St. Luke's MSTI at 10:20 AM and didn't get finished until 5:45 PM - a long day in the Infusion Center.

Went to Taco Bell and checked in to my motel - just 9 degrees outside. Fell asleep and woke with redness over my Bard Power Port site...perhaps I am allergic to the plastic on the Huber Needle. The old port site is red too - from the dressing they initially used yesterday.

My other labs from 2 Jan 2012 drawn prior to the start of Cycle 3 of carfilzomib/dex and the beginning dose of cytoxan.

My white blood cell count is low at 3.0 (norms 4.5-11); hemoglobin low at 10.4 (norms 12-16); platelets slightly low at 138 (norms 140-440); and Absolute Neutrophil Count (ANC) low at 1.73 (1.9-8.8).

My kidney function tests are ALL NORMAL on 2 Jan 2012

Creatinine 0.94 (norms 0.52-1.04); BUN 12 (norms 7-17); BUN/Creatinine Ratio 13 (norms 10-20) and GFR >60 (norms > 60).

2nd ASCT - Day 55 - July 12 2012

By the time I got back to Greeley, Colorado after all my tests at UCH, the dressing over my bone marrow biopsy was itching INTENSELY.  I took my own Durapore Silk Tape for the dressing since I'm allergic to almost all adhesives. As you can see, the nurse practitioner applied it liberally.

I was supposed to leave the dressing on for 24 hours, but I had Jani carefully peel it off tonight because I just couldn't take the ITCHING. So, I guess I'm allergic to silk tape now TOO.

Jani replaced the dressing with a piece of telfa non-stick dressing and a Tegaderm cover to hold it down.

Bard Power Port Site Continues to Heal - January 3 2012

The site on my right chest wall where my Bard Power Port was removed is still healing 19 days after it was removed. Some tenderness still. The curving red line at the bottom is from the Tegaderm dressing that was put on too tightly.

Day 99 - It's a MAC - December 21 2011

I have moved from the darkness of the PC world to the light of a new Apple MacBook Pro. Now if I can only figure out how to make it go!!



My Bard Power Port site is healing SLOWLY - still have pain right over the site 6 days after it was removed on December 15 2011. That crusty looking stuff over the incision is dried up glue.

 This photo below shows both the Bard Power Port site on my right (left side of photo) and Trifusion Hickman Catheter site on my left side (right side of photo).

I received Zometa on Monday, December 19, 2011. I seemed okay on Tuesday, December 20, 2011, however, today I ACHE all over in my bones - especially my hips, back, and shoulders. Probably, the delayed response due to the fact that I also received Dex 20 mg on Monday, December 19, 2011.

Gas Prices in Greeley, Colorado are dropping below $3/gallon to 2.959 December 21 2011

 

Day 95 - 2nd Day Post Bard Power Port Removal - December 16 2011

The site of my Bard Power Port removal HURTS and ITCHES. I've continued to take 1/2 Percocet every 6 hours. Decided to go with no dressing, because even my Durapore Silk Tape is reacting to my skin.

Day 94 - 1st Day Post Bard Power Port Removal - December 16 2011

I just couldn't take the itching beneath the dressing over the site of the Bard Power Port today. I was instructed to leave the dressing on for 48 hours, but I had to to remove it. As you can see, after I lifted up the edges of the Tegaderm dressing, you can see that my skin was reacting.

The original dressing did not have a spot of blood it - so, I don't think it mattered that I took it off. My chest is not as bruised as I thought it would be. The horizontal incision is closed with dissoluble sutures and glue.I have quite a bit of pain in my chest wall and I'm taking 1/2 Percocet every 6 hours. They called from UCH Interventional Radiology today to see how I was doing. They said to call them back if the pain persisted beyond 1 week.

 My chest wall after the removal of the Bard Power Port on my R (left side of photo) and Trifusion Hickman Catheter on my L (right side of photo).

 I also think I'm having the beginning of a shingle outbreak on the back of my right thigh - feels inflamed and itchy at this point. Very hard to photograph. I took an extra Famciclovir 250 mg and I think that helped. I'm on Day 11 of 14 with my Revlimid 10 mg maintenance chemotherapy and just 2 weekly cycles of Velcade/Dex out of 4  - so, maybe that has lowered my resistance to shingles (varicella or chickenpox virus).

Back of right thigh

My January 2012 supply of Revlimid arrived via UPS this afternoon. I spent a lot of time on the phone yesterday making the arrangements with the pharmacy - this is going to be a monthly CHORE!

Day 75 - November 27 2011

Now, I seem to be reacting to my own silk Durapore tape - so, did away with the entire bandage today, Day 75, over my Trifusion Hickman Catheter site. It is no longer draining at all. I can actually mash on my chest over the site with only slight tenderness.

I have not been sleeping well EVER. My usual pattern is 2 hours of sleep - UP - 2 more hours and UP, etc. etc. So, I bought some children's liquid benadryl today and plan to take 12.5 mg (usual adult dose is 25 mg) at bedtime.

Day 73 - November 25 2011

The hole left behind after pulling my Trifusion Hickman Catheter is still leaking a bit of slightly bloody fluid - but, it is alot less sore today.

Busy organizing South Custer Historical Society (Mackay, Idaho) computer files on a new 2 TB external hard drive. Finally, my stomach is good and I can pretty much eat anything now.

Day 72 - Dressing over former Trifusion Hickman Catheter Site - November 24 2011

As instructed, I left the dressing over the Trifusion Hickman Catheter site in place for 24 hours. They had it cover with a green film and sure enough, my skin reacted to it.

I covered it with a gauze and my silk tape. The dressing is supposed to be exposed to the air and not covered with plastic film like Tegaderm.

The culture they did of the end of the Trifusion Hickman Catheter came back today with NO GROWTH - which is excellent.

Day 71 - Dressing over Trifusion Hickman Catheter Site - November 23 2011

I slept much of the evening last night which was nice. My left chest is sore and I took 1/2 pain pill twice in the night. I haven't had any shortness of breath. Today, the dressing over the site of my former Trifusion Hickman Catheter has a little more serous drainage. I've been instructed to keep the Tegaderm dressing on for 48 hours and not to get it wet (no shower). I supposed to take the dressing off tomorrow and put a new one on with just a gauze and tape - no tegaderm.

Trifusion Hickman Catheter Dressing Change August 27 2011

My skin felt irritated by the usual Trifusion Hickman Catheter Dressing they used on me August 5 2011. These dressings are intended to stay put for a week. However, since, I was anxious about it, Advanced Care Partner, Kirby, was allowed to change the dressing this morning and replace it with a Tegaderm dressing which I am more comfortable with because of my severe tape allergy. I was just constantly aware of the dressing and it itched some especially at the top.

The new tegaderm dressing in place now. I'm happy.

Chemotherapy Day 4 of Cycle 3 - Velcade/Decadron/Aloxi August 4 2011

My CBC today has the first normal WBC (white blood cell) count since my diagnosis. I continue anemic, but not as bad with Hemoglobin at 10.1 (norm 12-16) and Hematocrit 30.4 (norm 37-47). My platelets (clotting) have dropped below normal at 143 (norm 150-400), so I'll have to be careful not to bump in to things.

 Chemotherapy Day 4 of Cycle 3 - Velcade/Decadron/Aloxi August 4 2011. I drove myself to chemotherapy today and felt fine. My taster has been off for some time and is really "OFF" now - I'm enjoying the smell of food and the texture since I CANNOT taste it.

We did a test of Tegaderm clear film today on my left chest while I was at chemo. The Tegaderm was on for about 1 1/2 hours and when we took it off, it appears that my skin did not react to it - Yippee~

Tape Allergy is a concern as I approach the Trifusion Catheter Insertion for Stem Cell Harvest

My severe Tape Allergy is a concern as I approach the Trifusion Catheter Insertion on August 12 2011. I sent Dana Godec, RN, Transplant Coordinator at the University of Colorado photos of my skin reaction to the tape and steri strips used during the placement of my Bard Power Port in my right chest on June 14 2011. In addition, I ran a fever of 101.2 until the tape and steri strips were removed and my temperature returned to normal.

The only type of tape that seems NOT to react on me is Durapore Silk Tape. I bought several rolls online and take it to my chemotherapy sessions each time. I am also Latex Sensitive. Dana wants me to test Tegaderm on my skin prior to the Trifusion Catheter Insertion.

Chemotherapy Day 3 of Cycle 1 June 20 2011

I had my 3rd Velcade, Decadron, Aloxi chemotherapy this afternoon. Drew my CBC first through the port.

My implanted Bard Power Port is hurting less and less, but it still bothered me to have the Huber Needle inserted.

Nurse Robin getting my port ready for use June 20 2011.

We brought my own Durapore Silk Tape to anchor the Huber Needle while the chemotherapy, medications, and fluids ran. This is the only tape that I don't seem to react to. We are going to order some more online.

Decadron 20 mg (steroids) in 100 cc of Normal Saline

Jani watched television on her iPhone. She has some app that allows her to control her television satellite from home - she is our techie girl. We had a late lunch (turkey sandwiches and yogurt) while my chemotherapy ran. I talked to my cousin, Vic Lundberg, in California to let him know about my diagnosis. His daughter, Chelsea and her husband Chris are moving in with him with Kennedy Rose (born March 11, 2011) from Tahoe.

The last 20 minutes or so of the session, I became really tired and just wanted a nadir (nap). Jani drove and I slept in the back of Bart (2006 Honda Pilot) on the way home.

Bard Power Port Day 4 Post Op June 17 2011

My implanted venous access port is looking way better on the skin surface. It is still very sore underneath in my chest wall.

Bard Power Port Day 4 Post Op June 17 2011

I woke in the night about 3:30 AM with a tad of nausea. Ate 1/4 of a peanut butter sandwich that Jani had prepared for me and put in a zip lock baggy and felt better. Each time I feel a tinge of nausea, I FEED it like any good Sagittarius.

Bad Day at Black Rock Wednesday June 15 2011

I woke at 3:30 AM with a fever of 100.6, shaking chills, headache, and PAIN in my newly implanted Bard Power Port (right chest wall below my clavicle). In short, I was miserable~ My port site doesn't look any different fhis morning - it is just SO PAINFUL!

I took 500 mg of Tylenol and 1/2 of Percocet without much relief. I don't know if the fever is from my port, the Velcade chemotherapy or the Zometa bone building medication (all received on Monday June 13 2011) or a combination of everything. I just know, that I don't feel well.

Bard Power Port Day 1 Post Op June 14 2011

Any where they had tape on me, I reacted or bruised.

The tissue underneath the port is exquisitely TENDER! I hope I'm NOT allergic to the port material like I am to tape!  I'm hoping it does a WHOLE LOT of HEALING before they have to access the port at 10:30 AM on Thursday, June 16th 2011 for Chemo Round 2 with Velcade, Decadron, and Aloxi.

I also have a tape reaction/bruise on my back.

The Harmony Surgical Center nurses called me to ask how I was doing and I told them about the tape/bruising areas.