Update on Cidofovir Infusions

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/23/2013 11:54 PM (GMT -6)   
Hey all just wanted to pass on the latest news regarding my quest to get rid of my warts.

I saw my Dermatologist, he's the one who ordered last Fridays infusion and admission to the medical center. He asked how I was feeling and looked at the areas with the warts. He thought the area around my left thumb was red. So he asked to take photos of ALL areas of the warts, and informed me that if we can get rid of them, he'll be publishing my case and it will go into the Medical Journals for all Drs to read and see the photos.

He asked me twice if I wanted to continue with the treatment and I said yes. He told me that he's only had one other patient to complete the full course on the drug. He said that patient had a worse immune system than I do, but they had success and got rid of his warts. The other patients that he treated developed side effects and they had to stop treatment.

As my problems with my warts are to the point where I really have no choice but to move on ahead. Unfortunately, only this Dr has the knowledge to give this drug for this condition. He will not allow my infusions to be completed in a different hospital or infusion center.

My admission and stay were a HUGE nightmare. Well, the Dr informed me that I have NO choice in this part, I will have to be admitted weekly for 3 days a week for possibly the next two months. He said as I get more and more of the drug in me, the more likely I'll start to have side effects other than feeling like I have the flu.

He said I need the infusions weekly so that we can get the maximum effect from the drug. I'm really dreading this, my stay was terrible, the food I couldn't eat, it was roasting hot in there, they weren't prompt on getting my meds that I normally take daily on time, and some of the nurses played Dr and would refuse to give me my pain meds when due, and the medical center is in a HORRIBLE part of town.

When I went in last Thursday night we had to park three blocks away, not only did i barely make the walk, but when my hubby left to walk back to the car he was uncomfortable being out on the street. Mind you this is a man who has encountered combat conditions in Iraq and Afghanistan.

So this time, I'll go in on Monday, most likely after 9pm. I'm going to have him drop me off in the circle, since he works, and I DO NOT, want him on those streets at night, I won't see him again until he picks me up once I'm discharged. Yes, I'm guessing it will be a very LONG 3 1/2 days if you count the night I go in.

Please pray for me in whatever beliefs you may have. Positive engery is most welcomed too. We will continue with the treatments as long as my kidney function stay steady and my WBC doesn't drop to low. If the drug works I'm in for pain where the warts are. They should swell, become red, then the tissue should die and fall off. Hopefully, I'll have healthy skin tissue underneath and my warts gone.

Thanks for listening, right now all I have is you all. My immediate family is being difficult. I'm feeling utterly alone, unwanted, and a huge burden to those closest to me. I still have a couple of major hurdles to jump before I'm admitted on Monday, I'm hoping my PCP can assist me with them tomorrow.

Hugs,
Barbara

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 1/24/2013 9:14 AM (GMT -6)   
((((((Hugs)))))))) You will certainly be in my prayers. I hope things will go well with you.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/24/2013 8:17 PM (GMT -6)   
My goodness, Barbara. I just want to rush right to where you live and give you a great big hug. I am keeping you close in my heart and thoughts.

Laura

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/24/2013 8:33 PM (GMT -6)   
((((((((((((((((gentle hug)))))))))))))))))
I hope you get different nurses this go around.
Did you ask him to leave information about your pain medicines with the nurses so you could get them regularly.
Maybe you could get permission to carry your meds with you and take them when needed.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/26/2013 12:09 AM (GMT -6)   
Omega, Laura and Joy, thanks so much for the hugs. I'm up and can't sleep tonight cry I went in today and received my Benylsta medication. Not sure if it's the drug that has me up, or the house cleaning to be done. I have a friend coming by tomorrow AM She and her hubby are missionaries in Nepal. We were able to meet up in 2007. So it will be nice to see her, but there are several things I want done before she comes.

I will go into the hospital on Monday nono nono they better make this stay A LOT better this time. My stay last weekend was brutal. My PCP emailed my oncologist and asked if their nurses could access my port and deaccess my port. The answer was a big fat NO mad mad

The nurse who did my infusion gave me 7 days of heparin flushes which i will take it with me. My oncologist came and spoke with while getting my infusion, he said that the Dr's, Nurse's and others don't like to be questioned. Whereas, the military medical center encourages us to question all of them. So he said be firm but feel free to ask questions and refuse treatment if they are doing something that's potentially dangerous to me. Since I have some heprain I'll flush it myself and then let them pull the huber needle.

My pericarditis is still really bad. I hit a blood vessel and I have a hematoma that's 4" high by 6" wide and a HUGE knot where I gave myself the shot. Everything is fine with the family, daughter returns to college Feb 3rd or 4th.

Anyway, just wanted to let each and everyone of you ARE appreciated. I know I can always count on each of you for support. Wishing you a good weekend.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/26/2013 12:47 AM (GMT -6)   
Ouch! My mom bruises like that when she bumps into things. Her doctor jokes that if he just looks at her wrong she will get a hematoma.

Hang in there and try not to overdo things.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/29/2013 9:14 AM (GMT -6)   
Well I'm at the Medical Center for my next round of treatment. I was admitted at 8:30 last night. Hubby dropped me off and I was brought straight to the ward. I'm on a different ward and a different set of internal med docs.

They did say the other team spoke with them tho. I spent all day Sunday sleeping and yesterday. I have a huge bruise on my belly it's 7" inches wide by 6" high, the Dr looked at it and said it was most likely from my blood thinner shot. So I've stopped them and am back on Coumadin.

I got a roommate last night who seems to be pretty bad off with kidney issues. They are allowing her hubby to sleep in our room. Makes me kinda feel uncomfortable, but I do understand she's older and sick.

I had my Benylsta Friday and I have felt really bad since then. I'm just so so frustrated with my life, I feel totally overwhelmed and most days wanting to give up and just never face life anymore.

Hope you are all better than me and hope you have a good day.

Hugs,
Barbara

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/29/2013 8:02 PM (GMT -6)   
Well I received my medication earlier, and have to say I'm not feeling to well. I have a slight headache and just feel plain old yucky.

My hemoglobin has dropped some more, my bruise on my belly covers from hip to hip. They are going to do a CT scan just to make sure I'm not bleeding internally.They are pretty sure it's just in my tissue but they want to be safe.

They're thinking it's my MDS that's stirring things up. It's so strange I have clotting issues, but yet I have a bleeding issue. Makes ZERO sense to me but oh we'll, I'm not gonna stress over it.

If my kidney function is good in the morning I may get to go home tomorrow, which I'll gladly do. This hospital is old I'm on the 10th floor and it's hotter than hades here.

My roommates hubby went home a bit ago, that made me feel a bit better. It was really strange having another patients hubby sleeping in our hospital room. I was kinda shocked they allowed him to sleep in our room last night.

Anyway, that's the scoop on me for now. I worked with a second year medical student today, poor girl had to take my medical history and do a physical exam. Her eyes glazed over when I handed her my medication list LOL. She said to me, "I've never seen a patient that takes 20 pills a day, how do you keep track of them all?"

Hope you all have a good night. I'll let you know if I get out of this place tomorrow.

Hugs,
Barbara

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 1/29/2013 10:17 PM (GMT -6)   
Hi Barb,

I'm glad your room matewent home. Lets hope you don't get another one tonight. You are a good patient for these 2 year med students to learn from, you can teach them alot in one sitting. I was going to phone you am 8:00 my time, but I figured it was to late with your roommate - not knowing she left. If I lived closer I would be there with you every step of the way, you know that. So I will just keep writing and phoning until your spirits are lifted.

Hugs,
Julia

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/30/2013 6:28 AM (GMT -6)   
Thanks Julia I know you would be here to see me. I must have gave the wrong impression, my roommate didn't go home, her hubby did LOL.

He decided that he wouldn't sleep in the chair again last night. My headache seems a bit better this morning, but still there.

They couldn't get blood return on my mediport again this morning, evn after flushing it a lot. Not sure if I'm going home yet or not. Will update later.

One of the Drs has been here this morning already. As she was leaning over and I looked at her white Drs coat, and low and behold, her first name is the same as my daughters. She was kinda shocked as you know there aren't a lot of Nikita's out there.

Will update later, gonna try to sleep some more.

Hugs,
Barbara

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/30/2013 10:20 AM (GMT -6)   
Yup, Julia and I would make a party of it! I guess we'd have to include the roommate otherwise I'm sure we'd get kicked out! Some party hats (I favor a Dr Seuss-type horizontal stripe), some crepe paper room decor, and of course some major noisemakers!

Hope your mediport starts cooperating soon, and that you get to go home!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 1/31/2013 10:39 AM (GMT -6)   
I'm in!

Julia

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/2/2013 11:55 PM (GMT -6)   
Well it's 1am EST, I'm up as I spent the whole day basically sleeping. I stayed up way way to late last night. Guess it was around 3am before I fell asleep.

Got up around 11:30am and was back in bed asleep at 2:30pm. Hubby crawled into bed with me around 3pm and we didn't get up until 6pm.

My daughter is returning to college tomorrow. I'm really gonna miss her, even though we don't talk or do a lot durning the day, it's just nice knowing she's here. It's been snowing today and is suppose to do so through tomorrow night. So I'm hurting pretty bad.

I'm really having a VERY difficult time, I believe the Benylsta is causing serious issues with depression for me. The other evening my daughter told me like 5 times "Mom I think you should take the pills the Dr gave you". My Dr prescribed Ativan for really bad days, I'm full of despair and really FEEL like giving up on life.

I see my Rheumy on Monday, I think we're gonna have to look at another option for me. I don't feel one bit better on Benylsta and I actually feel worse I think. I still can't cut back on the steroids, my pain is 24/7 and I just don't know HOW my Drs will get me feeling better.

My mediport is fixed thankfully, not sure if I'm having my next dose of cidiovair here at home, in an infusion center, or in the hospital again. The Drs were wanting me to do it at home, but I have a $3,200.00 copayment that needs to be met. Medicare DOES NOT pay for any type of infusions at home. Not sure how much at a center, waiting on a response on that. My military insurance will cover 100%, after I've paid the $3,200.

This is really upsetting to me, when I picked up hubby from work on Friday, he informed me that he may be facing a 20% decrease in hours at work, in March. He works for the Dept of Defense, and with our stupid politicians not agreeing on a budget, he may lose hours which equals money. I'm worrying constantly that if his hours are cut we can't be paying out copayments. Plus we're trying to put our daughter thru college, etc you get the picture.

Sorry, this turned into a VENT, that seems like all I do lately. I'm just so so tired of it all, I know I should be thankful that I'm alive and have a roof over my head, food in my belly, and a hubby, daughter, and friends that care about me. I'm sure you all understand though it's hard to stay positive when you hurt at a 7-8 out of 10, most days and feel like poo poo 24/7. Thanks for supporting me.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/3/2013 11:46 AM (GMT -6)   
((((((((((((gentle hug)))))))))))
I agree with your daughter take your medicine.
It's hard to admit we need this kind of help when we are type A personalities. Everything has to be perfect and we fight through our pains. Try not to fight taking the medicine.

Thanks to a screwup with my pcp I've been without my paxil for a few days. :(
I'm beginning to feel the weight of the world pressing down again. I'm feeling like poo-poo myself today.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/3/2013 9:33 PM (GMT -6)   
Hi Joy, sorry to hear you're not doing to well today either. I had a busy day, we took our daughter back to college. Hubby and I got home around 7. I'd been up since 10 this morning, didn't fall asleep until sometime after 2:30am.

With me feeling so out of sorts, I'll really miss her. I've never had issues with anxiety and this is really a new place I'm in. I've dealt with depression since I was a teenager. Attempted suicide as a teenager, of course I spent time in the hospital then, and one other time after I was married in the late 80's. I'm just worried that I'll just stay in bed unless I need to see the Dr. When my daughter is here I'm more likely to get up.

I'm on cymblata and was given the atavin for the anxiety. I knew that the Benylsta could cause issues. My Dr had increased my cymblata just for that reason. I also think I'm dealing with so many different illnesses that I'm 100% overwhelmed. My pain is through the roof and I'm on serious heavy duty pain meds and I've got the tolerance issues going on.

Thanks for your support and I hope you get your Paxil soon. Try to stay positive.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/4/2013 12:01 AM (GMT -6)   
I saw the pharmacy and explained my problem and was able to get some emergency pills.

Do you see a psychologist or psychiatrist? I see a wonderful lady who is really helping me out with my feelings of being overwhelmed from the pain and stress. I'm able to see her for reduced fees through United Way Org.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 2/4/2013 9:27 AM (GMT -6)   

Barbara, remember when I was snippy at you when you would say, “I know I shouldn’t complain because I know some of you are worse off than I am.” My logic said Barbara is the worst on the forum, so she’s my go to girl whenever I’m having a pitty party and need to say, “Well, at least I don’t feel like Barbara.” Looking back that was very rude and insensitive of me.

Well, BF and I were discussing this yesterday and he brought up a very good point. There are those worse than you Barbara and they are so sick mentally or physically that they can’t put a sentence together to write on our forum, and I thought of something else, there are those who don’t post on our forum because they lack empathy which is something no one has more of than you.

Keep those vents and updates coming Sweetie. Love Ya, Donna


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/4/2013 8:53 PM (GMT -6)   
Donna, I didn't think your comment was rude and insensitive. I know how sick I'm truly am, and my future is VERY uncertain, but that's the case with all of us. NONE, of us are promised tomorrow, and I could leave my house, to go see one of my many Dr Appts, and die in an accident.

I try to remind myself, that there are people out there worse off than me. I'm just struggling so badly right now, it's hard to stay positive. I'm overwhelmed with all my health issues. Now I've been told by hubby, because of the budget issues in Congress, he may have his work hours cut by 20%. This is a major worry for me, we're trying to put our daughter thru college and I may be facing a HUGE copayment on my IV cidiovair if I can't get NIH to approve to give it to me. Will be seen tomorrow by them.

Saw Ruemy today, he gave me three shots, one on my sternum, one on my ribcage under my left arm pit/breast area. Will continue on Benylsta until March then will discuss options then.

My pain is still really high and really I'm about to lose my mind. Can't help but wonder if tequila shots would work better than my pain meds.

Donna YOU are an inspiration to me, last year you went thru so much, but YOU didn't give up. I'm proud you hung in there and climb that hill. I hope things get better with the Benylsta infusions for you.

Hugs,
Barbara

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/7/2013 2:29 AM (GMT -6)   
Thanks everyone for all the prayers and positive energy, I really appreciate them. I've got some serious health issues going on, in addition to my chronic pain. I know some of you knew that I'm trying to get rid of warts that I've been unable to fight off, as I have NO immune system.

Well, the Dr I'm seeing at NIH, is worried that the Dermatologist is going to do me more harm than good. She's worked with and feels he's a great Dr, but she feels that my warts will come back, and the drug they are using is very toxic, and can cause kidney failure within 48 hours of the infusion. Apparently, my kidney function did change with the last infusion. The dermatologist's resident read the wrong labs to me last Friday she'd contacted me and said they were great. They caught it yesterday, and called me to ask me to repeat my kidney function test on Friday prior to proceeding on Tuesday with my infusion here at my home.

While they were trying to reach me I was with the Dr at NIH, and she said until we figure out what my problem is with my immune system and IF they can get me off steroids, she truly believes the warts will return. She told me, and the oncologist agreed with her, that this drug should NEVER be given at home. She's also worried that I haven't seen anything happening with the warts yet. She wants to give me something to boost my immune system but that will cause issues with my auto immune disease.

The Dermatologist has only treated one other patient with this drug, and he said that this patient had a worse immune problem than I do. Every Dr I talk to has their opinion, and now I'm totally confused and I'm not sure what or who I should listen to. The patient like me didn't show any signs of change until he had received 4 infusions. However, with my kidney function elevated to the high norm they both are worried now about proceeding forward on treating the warts. It's just not a simple case of warts either, my fingers are deformed from them, they are growing all over me know and literally I feel like the elephant man people stare at my hands and act strange around me. So this is a HUGE problem for me and I've been dealing with the problem since 1999. It was just one small wart on my thumb then.

So I guess what's gonna happen, is I will be admitted to NIH next Monday. The Dr's there at NIH want to run tests and see if they can figure out what's happening to me. I'll need another bone marrow biopsy, 24 hour urine collection, I'll need to see Rhuematology, and once they have determine that the kidneys are good, she's willing to give me one more dose of the drug, and IF I don't see any results, I'm to have NO MORE infusions of this drug. If we see changes we will have to cross that bridge next week.

I feel nothing but severe disappointment, I'm feeling totally alone, despondent, and that no one understands how I'm feeling. My pain is totally out of control and I can't do much on that part. I've called and left messages for my PCM, she prescribes my pain medication or any other controlled substances. I've emailed her at work and at her personal email, and I've not heard from her. This is really unusual for her. I'm guessing that she's either on vacation, OR I think she may be deployed to another military base, or on the USS Comfort.

My Dr is in the military she's active duty and can be pulled at anytime to go TDY. I'll try to contact her administration clerk tomorrow. However, unless I'm being admitted to the military medical center, NO other Dr can prescribe me controlled substances BUT her period. I didn't get to sleep until almost 4 last night and it's currently 3:00 am now. I was up at 9:30 this morning, and I've yet to sleep tonight. I have to be up and going at 8:00am this morning.

The Ativan she gave me for my anxiety doesn't seem to be doing anything at all for me. With my tolerance issues, I'm wondering if the dose is to low to affect me. I also was given some more good news NOT. It looks like I do have glaucoma in both eyes. I also will need my cataracts removed. The eye Dr plans on waiting until April before we do anything. He wants to take photos of my optic nerve. My pressures have been high for years. I'd see an eye Dr and he'd put me on drops, we'd move or the Dr would move and I'd get a new Dr and they would say it isn't necessary to take the drops so stop them. I've been yo-yoing back and forth between drops for at least 15 yrs now.

I'm a total mess and feel like such a HUGE burden to my family, and I truly mean it when I say I'm at the end of my rope and I'm not sure how I'm gonna hang on. Thanks for letting me vent and for being here for me. For those who don't know me I'm dealing with the following issues:

Lupus/RA/Fibro/Pulmonary Hypertension/MDS (Blood disorder), Gastroparesis, DDD in my back, Severe Anemia, Warts to the point of deforming my thumbs and now growing all over my knees, arm pits, etc, Complex Sleep Apena, Restrictive Airway Disease, Myopathy from the steroids, severe osteoporosis, constant pericarditis and pleurisy, and a bunch of other things to many to mention.

I've been taking steroids at about 25mg daily for almost 12 years now, so I have all the terrible side effects from the steroids. I'm taking a drug for my lupus that causes severe depression, anxiety attacks, suicidal thoughts, (6 patients from the clinical trial committed suicide), and it causes insomnia. I'm a total wreck and honestly my pain is holding steady at a solid 8 everyday now.

Thanks for supporting me and keep the prayers coming and the positive energy too. I'm hanging on BARELY with my finger nails. Hope you all are sleeping and having low pain tonight.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/7/2013 12:41 PM (GMT -6)   
Oh, Barbara, I'm so sorry you feel overloaded. You have a right to feel like you do. You're going through the wringer.
I'm going to start a daily thread just for you.......
"Jokes for Barbara"
Because laughter is the best medicine.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/7/2013 9:28 PM (GMT -6)   
Thanks Joy for starting the jokes thread for me. You're right laughter really does help.

I'm unable to stay upand post tonight. I feel asleep about 4:00am and saw hubby off to work. I have to try to get more sleep.

So, thank you all. Ican feel your prayers and I appreciate me. I feel my Drs made some mistakes. I hope you are well and having very low pain days.

I'm wiped out so I'm going bed, thanks again

Hugs,
Barbara

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/7/2013 9:47 PM (GMT -6)   
Sleep well, Barbara. ;)
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

rhnicks
Regular Member


Date Joined Jan 2013
Total Posts : 27
   Posted 2/7/2013 10:13 PM (GMT -6)   
I got nothing except 'I'm sorry' and that I am not facing what you are by any means but I do understand how you feel. yeah

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/8/2013 12:48 AM (GMT -6)   
Have a good rest, Barbara.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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