new to forum, diagnostic mammo and ultrasound found large lumps

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exqualls
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Date Joined Aug 2016
Total Posts : 159
   Posted 5/30/2017 10:16 AM (GMT -7)   
Thanks, Susie. I'm leaving for radiation in a few minutes, and I'm really happy to get back to cancer treatment! I'll write more later.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 5/31/2017 6:59 AM (GMT -7)   
I just got back from my 2nd radiation. Today it took much less time, just as they said it would. It was 15 minutes tops. I don't know if i'm imagining it, but I feel kind of achy all over now. My breast looks the same so far-- no sunburn, but i think that may be something that comes with the cumulative effects of radiation. I leave in an hour now to go to OT and PT for my Guillain Barre. After that I'll be REALLY tired.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/1/2017 7:06 AM (GMT -7)   
Hmmmm. After my 2nd radiation yesterday, again felt achy all over, like in my bones. Today was the third (took only ten minutes), and again I feel achy. I don't want to jump to the immediate conclusion that the achiness is from the radiation, because my husband got sick with flu-like symptoms (including severe all-over body aches) on the same day I started radiation. I don't have any other symptoms, though, while he has sneezing, sore throat, runny nose, coughing, watery eyes, etc.

I guess I'll read up more on radiation side effects.

I washed my wig for the first time last night, and I was so nervous about how it would look afterward. The lady at the wig store had said to wash it gently in the sink with wig shampoo in cold water, rinse, then turn it inside out and let it air dry on the open wig stand (my stand is not a head form, it's completely open, just a couple criss-crossing, thin plastic pieces). So I checked on it periodically as it dried and it looked like a scraggly mess. Since you aren't allowed to blow dry or use any kind of iron--curling or straightening--I began to freak out. However, I put it on a few minutes go and after a few quick brushes with the wig brush, the waves and style reappeared exactly as when I bought it. Yeah!!

Best of health and positive thoughts to all who are reading . smile

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/1/2017 6:55 PM (GMT -7)   
I couldn't find information anywhere that listed achiness as a side effect of radiation. I also realize that within the last couple of days I've felt down, depressed. That is not me!! I'm so naturally positive, I make people sick. In previous posts I'd been saying how much I was looking forward to starting radiation, getting back to defeating cancer, but there is no getting around the fact that I have been depressed every night this week.

And for anyone reading who is only interested in what I'm going through with breast cancer, skip the rest of this post. Originally I hadn't wanted to go on too much about my Guillain Barre. But I realize I DO think it's beneficial to describe what I'm going through with that, as well. Beneficial for me, of course. Beneficial to the maybe one other person reading this who may also suffer from Guillain Barre. But beneficial in general to anyone with breast cancer who then also finds themselves dealing simultaneously with another major catastrophe-- whether it's a disease or some other traumatic event.

Since I began radiation I think my Guillain Barre IS getting worse. The numbness in my fingers feels deeper, and the same for my feet and calves. By about 8pm I am ready to scream in pain, and I picture relief from my hand pain in the form of someone chopping off my hands. My brain will tell me I need to scratch my foot (for example), however as I scratch the area, I realize the place that feels like it needs to be scratched is about an inch or more below the surface of the skin. Today I was in a store and felt a drop of water land on my hand. I looked up to see if I could see the leaking ceiling, but couldn't find it. I looked at my hand to wipe off the water, and there was none. I attributed that to the droplet beading up on my sunscreened hand and falling off. In the next few minutes in the store I felt 2 more drops of water land on my hand. Of course, there was nothing there. Then in the car on the way home from the store it felt like a drop of water landed on my lower leg. I looked down to discover that the place I felt the water was underneath my sock. Guillain Barre attacks the nerves and destroys and/or alters (at least temporarily, sometimes permanently) how the nerves convey information to and from my brain and limbs. This is a weird-*** disease!!

Post Edited (exqualls) : 7/18/2017 2:20:41 PM (GMT-6)


straydog
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Date Joined Feb 2003
Total Posts : 15175
   Posted 6/2/2017 7:07 AM (GMT -7)   
E, I think as you, the GB is really wreaking havoc with you. Mom had some fatigue after a few radiation treatments but not anything long lasting. But with that said, she also did not have GB going on either. The men in the PC forum say they get a little fatigued with radiation but not something long lasting. Chemo was harder than radiation for them. Do you see your dr any time soon that has been treating the GB? What about asking someone where you are taking radiation at, I think you should ask them about all of this.

Glad to read that your your wig situation is taken care of. One more thing out of the way. You really are stronger than what you give credit for. You have had many hurdles & the GB has been a real kick in the teeth. Will just keep praying you get past all of it, sooner the better. As for being depressed, well look at the journey you have been on. I have had plenty of depression bouts all relating to health issues & have had counseling & meds for it. A person can only take so many hits when it comes to health issues. Please don't let it get out of hand is all I will say. Sometimes a short period on meds can be beneficial. Keep writing your thoughts here, believe me others will benefit from your writing. The guests that come here & read is incredible. So keep expressing yourself.

Check out this website & see what you can find on radiation. Inspire.com/Groups/breast cancer. I would be willing to bet you will find out info there on radiation. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/4/2017 8:59 AM (GMT -7)   
I see the neurologist who is treating me for my Guillain Barre in about 2 weeks. I see my primary care doctor in just a couple of days. I had both OT & PT yesterday. One of the therapists has been at it for 25 years has seen during that time just 4 other Guillain Barre patients besides me. So I asked him if he'd heard of anyone else experience the feeling of drops of water landing on them, and he said No, but added when there is damage to nerves, it did not surprise him, as just about any weird feeling can happen. That rang true to me, and reminded me of the nerve damage I had after a back surgery 13 years ago.

I was left with a very unpleasant feeling on a maybe 3" x 3" area of skin on my upper left thigh. The first time the weird feeling happened was when I was still in the hospital after the surgery. A nurse was doing something with my IV and suddenly it felt like a needle was being violently scraped against my skin. I shrieked and asked what the heck she was doing. Of course, she was not doing anything near my leg. That feeling happened a few more times in the hospital, sometimes more like someone was torturing me with a broken, very sharp piece of glass, dragging it quickly back and forth on that patch of skin. The feeling is so convincing. I had asked my doctor about it then and he said that since the surgery was basically at my spinal cord, that odd nerve reactions can occur and should lessen or disappear in time. Since then, 2004, I have experienced the jagged piece of glass scraping my thigh maybe 6 times---usually after a particularly physically stressful day of yard work or kickboxing. So that is likely what's going on here--I have nerve damage so weird feelings will happen, like the drops of water.

I do take an anti-depressant, ever since my breast cancer was diagnosed. That diagnosis pushed me over the edge, compounding the problems I was already dealing with, financially, with my marriage, with my oldest son. And in the last few weeks the dosage was increased.

I am now starting to wonder if I am getting lymphedema, a side effect of the mastectomy, as all my axillary lymph nodes on the left side were removed. I can't get rings to fit, and the medical alert bracelet I wear on my left arm is tight. However, since I have Guillain Barre, it is also severely effecting my fingers, hands, and to some degree, arms (as well as my legs and feet). I see my oncologist in a couple weeks so I'll discuss lymphedema with her then.

Susie, I went to the inspire website and without joining read around for awhile. Thank God for the Internet and forums so we can learn so much from others' first hand accounts.

Well I have babbled on for quite awhile here! And with how poorly my fingers function, the time and effort to correct my mistakes has worn me out, lol.

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 7/18/2017 2:25:23 PM (GMT-6)


straydog
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Date Joined Feb 2003
Total Posts : 15175
   Posted 6/7/2017 1:54 PM (GMT -7)   
E, I don't know maybe you can talk to the neurologist about a topical compound for the nerves in your hand. If you get time perhaps you can go back & look at that stuff I posted about compounds. At this point pretty much anything is worth trying with your hands. I see lymphedema being mentioned a little in the PC forum after nods were removed. Keep a check on the swelling.

Your thread here at HW has had almost 11,000 views!! There is such a reader only audience here that is just incredible. So, I am sure your posting here has helped someone going through the same thing. I have not ever checked out the Inspire website however, one of the guys in the PC forum mentioned it.

If I remember right your husband's SS hearing is coming up soon. Will be such a relief to get that over with I am sure.

I have my grandson today so I am off to see what he is needing, lol. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/8/2017 1:33 PM (GMT -7)   
Susie, I have written down the information about topical creams to discuss with my neuro when I see him next on 6/19. And you have a good memory--my husband's SSDI hearing is on 6/20. I am enlisting everyone I know who believes in prayer to pray for a positive outcome!!

I do think radiation is causing me to feel more fatigued, but I am looking on the bright side -- there could be far worse side effects, like vomiting or losing my hair again. My hair may be only less than half an inch long, but I love seeing that instead of my bald head.

I saw my onc a couple days ago (I had thought the appointment was a couple weeks away, I guess that's my chemo brain forgetting things). As soon as my radiation is over, the surgeon who did my mastectomies will do an out-patient surgery to remove the port in my chest (through which I had received my chemo drugs). I had forgotten about removing the port!

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 6/10/2017 11:56:57 AM (GMT-6)


straydog
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Date Joined Feb 2003
Total Posts : 15175
   Posted 6/9/2017 8:56 AM (GMT -7)   
Will be praying for a positive outcome at the SS hearing. The main thing is to have hubby to check with his lawyer to make sure they have his current medical records on hand, that is crucial.

I do hope the neuro will be open to considering a compounding cream for you. If you can get some of the pain down it will help you be able to do your PT & home exercises easier for one thing. Just being able to move them without severe pain would be an improvement.

Woohoo on the hair growth, you are moving right along now. That has to make you feel better that you are getting to progress with treatment. Once it is all done you can look at it in the rear view mirror.

We had a rain storm early this morning & we very much needed the rain. We are already in a drought because of no rain in the spring. My yard & flowers are happy to have any rain, lol. But will have to get creative on entertaining my grandson today, lol.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/10/2017 8:38 AM (GMT -7)   
We've been having rain almost daily as well. It pained me so much to see weeds growing up in my garden beds that I wheeled myself out front and slowly pulled weeds and wheeled myself around a garden bed that surrounds a large crepe myrtle. It took me 3 hours, but it was so rewarding to actually do a chore like that!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15175
   Posted 6/10/2017 10:32 AM (GMT -7)   
I understand, I have slowly been working with planting some flowers & the heat gets bad, so I start very early. I am really slow at doing this stuff. I finally potted the very last plant awhile ago. Now to get the back porch cleaned up. I enjoy being outside so much. I had to come in & cool off, lol.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/13/2017 9:14 AM (GMT -7)   
We are scheduled to get rain every day for at least a week, so no more attempts at gardening for awhile.

So, let me share my despair and frustration over my Long Term Disability and health insurance situation. I had short term disability until April 4, and when I was receiving that I got checks every two weeks, and from those checks payment for my Aetna health insurance was automatically deducted. Once it switched to long term disability, I only get a check once a month, and they do not deduct for the health insurance. I was told that I would receive a bill for the health insurance from another company, called bswift.

So, STD ended April 4.... at the end of the month I got my first LTD check, and was told I'd always get the check at the end of the month. But I did not receive a bill for April's Aetna health insurance. I called several different departments at Aetna and they had no idea when I would be billed, and no one had a valid number for "bswift".....May comes along and at the end of the month I got my LTD check, but again no bill for health insurance. Then a couple days later I get my first correspondence from bswift saying I owe a little over $3000 ($602 a month from January though May, and they included a coupon book to make each payment from January through December, and encouraged me to pay up for the missed months of January through April so my insurance would not be cancelled.

Of course I start to freak. The idea of losing my health insurance is unthinkable. At first I only started working 7 years ago to get health insurance for my husband and kids when he could no longer work and we couldn't afford COBRA any more. He'd had diabetes for 20 years and a heart attack, so medications for those problems is mandatory, and expensive, and we never know when he could end up in the hospital again. My kids had no health issues, but they are both "extreme athletes", so we had trips to the ER for stitches from falls, and possible concussions, so xrays and CT scans were very expensive. I was the only person in the family who never had any medical expenses.

But now the expenses for my cancer treatment, and now for my Guillain Barre Syndrome, far surpasses my husband's expenses, and for the most part my kids have outgrown their desire to do extremely risky sports and stunts. WE CANNOT LOSE OUR INSURANCE. So like I said I freaked, then calmed down and called bswift and explained that I did not owe $3000+, because payments for my health insurance from January through April 4th were already paid by automatic deductions from my STD checks. I asked for a letter confirming this and for them to send me a new bill from April 5th onward. The woman I spoke to seemed to comprehend the mistake and said their billing department would contact my employer to confirm and it would be cleared up.

Of course the story goes on to be a nightmare, with me continuing to get past due notices for the months already paid, and me having to make tons of phone calls and emails to both my employer and bswift, and everyone saying the problem will be resolved....but the past due bills prove otherwise.

I don't have the mental fortitude anymore to deal with crap like this! I used to be such a strong person, but for the last 16 years I have had to deal with so many problems, that I have been beaten down. I was feeling beaten down by many severe problems: marital, financial, and with my oldest son, BEFORE I got cancer, and then GBS, that there's not much left of me to deal with new problems that come along (like the health insurance).

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15175
   Posted 6/17/2017 7:57 AM (GMT -7)   
Oh E, I am sorry to read about the insurance garbage. By chance do you have copies of your STD stubs that show the insurance was deducted from your check? If you do, then I would make copies of it & fax this to them, that is your proof it was taken out of your check. This would be quicker than going through the employer to get a letter. Gawd I hate dealing with insurance.

Yes, I know you have been through so much just from you have written here. You need a break & relief from all of this stress. It has just been adding up over the years for you. I wish I lived down the street from you because I would come over & give you a big hug. In stead I am sending a cyber hug.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/17/2017 11:51 AM (GMT -7)   
Susie, big cyber hug back at you.

I had wanted to find copies of my pay stubs to show the deductions for health insurance but I only had email copies. But guess what? Sometime during the 5 weeks I was in the hospital for Guillain Barre my computer crashed and I lost everything. My email is working now, but every email from the past 12 years is gone. So, through many phone calls to my employer I am trying to get the proof I need, but all I get is the run around, always referred to a different department and told "it's being looked into". Ugh.

So I am halfway through my radiation! Yeah, 3 weeks down, 3 weeks to go. So far there are no changes to my skin. The cream the doctor recommended I use after each treatment stains my bra and whatever top I'm wearing, so I've started wearing tee-shirts I'd normally wear just for yardwork, since I don't care too much about staining those.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/20/2017 9:12 AM (GMT -7)   
I saw my neuro yesterday, and he agreed to prescribe a RX cream compound for my hands and feet. The specialty pharmacy will contact me after they've gotten it approved from my insurance, as to which drugs they will cover in the cream, and then will mail it directly to me. (So, thank you Susie for that great idea).

Since I am not improving as much as he expected, he wants me to repeat the IVIG (in his office this time, not hospital, unless I get worse and it becomes an emergency). He wrote out a new script for PT, but I am going to wait until I am done with my radiation as that is fatiguing me so much it is hard to do. He said I wouldn't do the IVIG until after radiation ends and after I've had my reconstruction surgery to switch out the failed, right tissue expander for a new one.

straydog
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Date Joined Feb 2003
Total Posts : 15175
   Posted 6/24/2017 8:58 AM (GMT -7)   
I am very glad to read the neuro was willing to script the cream. At any relief any potential relief is worth it. I have little to no knowledge about IVIG, I have seen it mentioned in other forums here. Will it be cheaper if you can do it in his office rather than outpatient at the hospital? I think you made a very wise choice to hold off on PT until after radiation is done.

I have not been posting much this past week or so. I had to have all my lower teeth pulled & fitted with a denture of sorts almost 2 weeks ago. What a nightmare this has been lol. The pharmacist called the dentist & said her long acting pain medication will take care of her mouth pain so he voided the darn script!! I was ready to throttle the pharmacist as she was very wrong. There is a huge difference between chronic & acute pain. I spent the first night walking the floors, crying, throwing up. I had an appt for a checkup the following morning & insisted the dentist be brought in. I reminded him that he was made aware of what I take & I did get a script for a few days of pain meds. I told the pharmacist when I took that script in I know exactly what you told my dentist yesterday & she denied it of course. I said go ahead & call him again, he will be expecting your call. I have to keep running back & forth out there for one problem after another. I remind myself this is temporary.

Has the SSD hearing been held yet, if so how did it go? I have been praying for a good outcome. Keep me posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/25/2017 10:52 AM (GMT -7)   
Oh my, I really feel for you-- dental work pain can be hideous, and I can't believe what the pharmacist did. I'm glad you finally got the meds you need.

I haven't gotten the compound cream yet, which the doctor thought i would have by now. So tomorrow I'll have to call the pharmacy and probably the insurance company, too.

When you have a disease, fighting the disease is only a small part of the battle--that's what I'm learning. Incorrect billing, fighting charges, ENDLESS calls to the insurance company and almost never is a problem resolved. I am STILL being double-billed for my health insurance from the time it was paid from my STD. I call people and talk and talk and talk and everyone SAYS they understand the problem and it will be taken care of. Yet every other day I get past due notices for the insurance that was paid already through automatic deductions.
I have little energy or patience to deal with THEIR mistake. Radiation fatigues me SO much, plus having GBS is draining and I'm still half paralyzed. UGHHHHHH
I did not go to the SSD hearing, as the attorney's office did not think I'd be allowed to speak, nor know how long it would take. My husband gave me a pretty thorough account of how it went, and I think his case was presented very well. I will be stunned if the judge rules against him. They said he'd get the judge's ruling in 4-12 weeks.
The radiation is finally starting to effect my skin. I thought the area that would be bothered is the area that has never seen sunlight, but my radiologist said it's the opposite-- areas like upper cleavage will be most effected, and that is what happened. The top of my breast/chest area feels itchy and irritated. She prescribed a steroid cream to apply twice a day and that is working.
Susie, I pray your dental nightmare is over. I remember when I was a child my great-aunt said "If I'd known I was going to live this long I'd have taken better care of my teeth." lol....so I'm going to go brush and floss right now.

Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 7/18/2017 2:41:46 PM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/26/2017 2:20 PM (GMT -7)   
Today started week five of my six weeks of radiation, and WOW, my skin looks really bad. From my chest up to almost my neck is red and scaly-looking. My treatment changed a little today; half-way through the doctor came in and drew some lines and dots on my chest, AND I got another blue tattoo dot. Then they added another piece of equipment to the radiation machine that came down closer to my chest and did some more treatment. Still, radiation is the easiest thing I've gone through since this all began.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 6/27/2017 9:23 AM (GMT -7)   
I called the specialty pharmacy about why I hadn't received the compound cream my doctor ordered 2 weeks ago. They had a very logical answer--they do not have a contract with Aetna, until July 1st-- then they will fill it. July 1 is just a couple days away, believe it or not, so that is good. It will be wonderful to get some relief for my hands.

Today's radiation didn't make my skin any worse (which I was afraid of), in fact this morning it looked better when I woke up, so props to the doctor for prescribing the right creams.

straydog
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Date Joined Feb 2003
Total Posts : 15175
   Posted 6/29/2017 8:24 AM (GMT -7)   
Awesome on finding out what the hold up is on the compounding cream. Just a few more days. Glad to see the radiation did not cause more skin problems, lets hope that continues. My mom's skin on her back became kind of tough & leathery feeling after radiation. The rash she got was in the front under her breasts & it was strange to us because they only radiated her upper back. The cream they rx'd took care of that.

Yes, I too took good care of my teeth. I later learned that 2 of my inhalers used to treat COPD & a PPI I was on for years was the downfall to teeth problems. Last year one of my daughter's co-workers started having problems with his teeth. This guy goes to the dentist every 6 months & has perfect dental hygiene & started having problems. This year his dentist was stumped at what was going on, they sat down & went over his meds again, turned out he was on a PPI for GERD & the dentist said there is your problem. This guy is in his early 40's never had a cavity!! I a beginning to think I need to reserve a motel room by the dentist office. In the past 2 weeks I have been out there 7 times!! You know they fix one problem & create 2 more. I just have to keep reminding myself this is temporary & will pass in the next 6 months.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 7/5/2017 7:42 AM (GMT -7)   
That is just so unfair!! To take good care of your teeth and then have the treatment for another issue damage your teeth! You can't win mad

As of tomorrow I only have 4 radiation treatments left! These treatments have really flown by. This morning after radiation while I was getting dressed, I saw something in the mirror, in the armpit area. Upon closer inspection I discovered it was skin that had peeled and balled up. When I pulled it off a large swath of skin came off as well. This really surprised me, as I had just examined my skin maybe an hour earlier when I got dressed, and although the area was sunburned looking, it wasn't peeling then. So I have more of that to look forward to. It's embarrassing to admit, but peeling off sunburned skin is kind of fun, lol.

Best of health and positive thoughts to all who are reading.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15175
   Posted 7/10/2017 11:21 AM (GMT -7)   
E, I was some kind of upset over the problem with my real teeth. I learned a little too late on that deal. All the info with the inhalers warned of yeast issues with the mouth & you had to rinse your mouth really good. My older sister has the very same issues & problems from using the same inhalers.

Oh, I never thought about skin peeling from radiation. Well, by now you are very close to thumbing your nose at radiation & seeing it in your rear view mirror. Any news yet on the topical script? And more importantly, any news from SS yet on your hubby.Something to be on the lookout for, the money is put in your all's checking account, start keeping any eye on it. My money was deposited 2 weeks before my award letter showed up. This happens frequently & am praying this goes through for you all too. Personally, I think the atty should have had you present at the hearing. When a wife came with a spouse here to a hearing the judge would ask if that was the spouse. Basically asked about the spouses daily activities & limitations. A spouse can make an excellent witness.

Keep me posted!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 7/10/2017 4:54 PM (GMT -7)   
Susie, I think I would have been a great witness on behalf of my husband, but it wasn't meant to be. Thanks for letting us know the check could arrive before the notification letter! There's been nothing in the bank or the mail yet.

Just one more radiation treatment to go! I am quite thrilled about that, but my elation is diminished due to the rawness of my skin, which continued to get exponentially worse as each day went by last week. The peeling layers are so deep in my armpit that it is actually bleeding. The doctor said that was in the normal range, and she also warned me that even after my last treatment tomorrow that my skin may continue to get worse for about a week before it the starts to heal.

Regarding my GBS, as of last night I am out of the main drug I take for the nerve damage, even though I called in for the refill with plenty of time to spare. The pharmacy said they are waiting on insurance approval. Grrrrr. Insurance companies sure do a lot to ensure they are disliked. The specialty pharmacy still hasn't filled the RX for the compound cream for my hand pain because.......take a wild guess......still waiting on insurance approval.

Bswift, the company billing me for my health insurance is STILL saying I owe for the 3 months already paid through automatic deductions from my STD checks. And I got another letter (like the one I had received in December), from my employer's HR department saying that as of 2 weeks ago I had been expected back at work and I was therefore considered a no-show, and in jeopardy of losing my job. The LTD department does not and will not communicate with the HR department at all. LTD has given me leave from work until November, so far, but HR thinks I was due back in mid-June.

When I called HR, I explained and she insisted I needed to call the LTD dept and have them send me Form X, and that I needed to email the supervisor of my department and let him know that I was not really a "no show" and what steps I was taking to correct the information. First, the LTD dept had never heard of Form X, so someone from another dept will call me back (yeah, right!), and second, in the time I've been away from work my supervisor has been fired (he was the best, most prompt and thorough sup I've ever had), and my replacement is a sup I had several years ago-- who was the worst, laziest, most ill-tempered person ever). So I have emailed him twice and received no reply.

UGHHHHH

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 7/17/2017 10:30 AM (GMT -7)   
Nothing has changed regarding all the confusion with my HR dept, LOA, LTD, Aetna ins, etc. Problem after problem to look forward to dealing with. Plus a new one-- the main drug to treat my GBS (Horizant, which is Gabapentin plus something to minimize the side effects of Gabapentin--this is for the nerve damage), Aetna is denying covering this drug. How can this be? This is THE drug to treat a very serious and painful, life altering disease!!!!

For some good news my breast and armpit area are healing nicely from the radiation. No more open, bloody areas! Yeah! Nothing is looking scaly or peeling, it just looks very sunburned. Whether this will just fade away in time, or still peel as sunburned skin tends to do, time will tell. I am just so relieved not to have the open, bloody areas in my armpit that were rubbing all the time.

I went to my onc on Friday just to give blood, and I go in today for the results (this was a more comprehensive blood work than they usually do, the results of which are ready in a matter of minutes.)
So hopefully there won't be any of this "well your blood work shows your liver enzymes are high, so you need at CT of your liver", which happened before one time.

I want to question her as to the efficacy of my chemotherapy since it was cut short. When I was getting the Taxol (supposed to be 12 treatments, one a week), that's when I had to stop after just 5 treatments, first due to getting pneumonia, then due to getting GBS, and I was not allowed to continue with the chemotherapy. Hopefully the amount of chemo I did receive was enough to kill any stray cancer cells....or else what was the whole point of it?

I'll write more when I know more!
Best of health and positive thoughts to all who are reading.

Post Edited (exqualls) : 7/17/2017 11:33:43 AM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 159
   Posted 7/18/2017 8:26 AM (GMT -7)   
I asked my onc about the efficacy of chemotherapy when I had to stop taking it before I was done with the regimen. She said I should be fine because I finished all of the Adriamycin and Cytoxan, and that in the past those were the only two drugs used for breast cancer, and that Taxol was added after studies showed adding it to AC helped even more. I asked if there were studies about how many of the Taxol treatments were needed to get the better results, and she said no. She seemed not worried, so I'm not worried.

All my blood tests were fine, but I have to have a CT with contrast of my chest to make sure all of the pneumonia is gone, since the last CT taken (when I was in the hospital) showed some "diffuse remnants" in the lower lungs, or something like that.

So after the CT, then my surgeon will remove my port, then I'll have surgery to start the process of rebuilding my right breast. It feels great to have a plan again that centers on my treatment and recovery from cancer. I just want to forget about GBS for awhile.

Best of health and positive thoughts to all who are reading.
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