iowagirl
Forum Replies Created
-
Posts
-
I am feeling better and better about the change in oncologists. Last night, I had a mixup of phone numbers when I went to return a call (didn’t know who had called me..just had the caller ID number). I didn’t recognize the lady who answered, but I explained I couldn’t get to the phone in time because I was resting from having chemo. We continued to talk (go figure…Julie talking?) and she mentioned the chemo…told me that she was in Mayo with her husband (leukemia that returned after a transplant) and then I told her “I” had just been there for surgery. It turns out that we are both from the same town…have NO idea who each other is ….but we kept talking…for OVER TWO HOURS. In the course of the conversation, she mentioned my first local oncologist and she wasn’t sparing what she thought of him. I won’t go into more detail here, but it was plenty to stop me from second guessing myself about firing the guy.
Julie T.
Nancy, I’m so very sorry to hear about your husband’s passing. God give you strength and good memories.
Hugs,
Iowa Girl
Julie t.Kris…I’m definitely there with your cheerleaders.
You’ll soon find more things to do and realize that even just sitting watching tv is “ok”. What is the cross stitch pattern of? I use to do that a lot, but haven’t done any for years now. Unfinished projects. Sigh.Julie t.
I’ve been here just a little longer than you and your husband, but our stories are similar. I had a 5 cm main tumor (left lobe) and a very small satellite tumor was found with intra-abdominal ultrasound. Same deal…clean margin…no mets…no lymph node involvement. Surgery was Feb 28 this year at Mayo/Rochester. I had some incision healing issues that delayed starting chemo, and then after one infusion, I developed blood clots in my lungs and one in my leg (the one in my leg was apparently there before the chemo and signs were missed by the oncologist)…in hospital for one week to get on blood anticoagulants. Today, I’m restarting chemo with a new oncologist here in town. FINALLY. Looks like your husband and I will be going forward with this… about the same time table from here on out. Is your husband going to get Gemcitibine and Cisplatin for his chemo? What was your husband’s staging ….mine was T2b because of finding that one extra tumor. Interesting…your doctors refer to it as a satellite tumor, but my surgeon corrected me and called it a “sister” tumor….meaning it arose from the same problem that caused the first one….and not because it necessarily seeded. The oncologist was also quick to correct that the small, extra tumor was not necessarily from seeding. That said…both recommended this adjuvant chemo….the surgeon VERY strongly (quote “We don’t do this surgery without you doing chemo.” ACK!!!…and the oncologist more gently, but definite that is what he’d do for his own family. As to the fear/fright….I’m not quite “there” yet….there being the fight mode 100% of the time. Give yourself some time to let this soak in and grieve for what’s been thrown at you before you start changing to the fight mode all the way. If you find that people won’t let you do that…then come here. I’ve found the most compassionate and understanding people here….we all deal with the same underlying issue. We, or a loved one, have been thrown the biggest curve ball of the game and the game looks rigged to boot. That said….the one thing my first local oncologist (the one I fired) said to me that I took away from meeting him, was that the ONLY statistic that matters is the one associated with YOU. The rest belong to someone else and are not YOUR story.
Iowa Girl
Julie T.And then there are the midwesterners…like I am….who don’t eat fish at all. Sigh.
I found it interesting that on a large study from Thailand, it indicated that while river flukes were indeed a part of the cause of more CC in Thailand, that it was to a smaller degree than expected. The study was trying to explain the “rest” of the cases and that’s when they discovered a link to the bacteria, H. Pylori, which is what I’m interested in as a possible cause of my ICC.
My husband’s GP also mentioned that hepatitis was more common in countries like Thailand also, and that, we know, is a risk factor as well.
The river fluke parasites are one part of the equation, but they aren’t the whole story. There’s so much that isn’t known, yet.
Julie T.
Patty, I’m so glad you saw the post and replied. I think Lovenox is probably the drug that my new oncologist mentioned. I don’t know how long the effects of the cancer last in the body…..my tumors were removed completely with no mets, etc. I’ve wondered if 9 weeks post surgery with blood clots showing up, indicates the cancer is still active somewhere,,,microscopically????? I do have a port…which has been problematic….difficult to access and sometimes hurts unexpectedly. Nothing has been mentioned by the new oncologist about taking it out….I’m a difficult “stick” for IV’s. Don’t know how hard it would be to move from Coumadin to the Lovenox ….getting off of one and onto the other…..but $$$ are not an issue. Our insurance through husband’s workplace has been excellent…..we’re very fortunate. We have a high out of pocket…($12K) but after surgery at Mayo and the pre-diagnosis tests here, and a surgery followup at Mayo at 6 weeks post op….plus one chemo IV …..we’re far beyond having to put out any more cash this year. Everything at this point is paid 100%. Some things are subject to approval, as with most all insurance, …even the chemo treatment, but nothing has ben refused or even questioned thus far. I’m going to talk to the new oncologist on Wednesday at my pre-chemo chat time about switching to the Lovonox. She mentioned how difficult the Coumadin was to manage during chemo and it doesn’t sound like she was really happy about the fact that I was on Coumadin. My GP….who was the doctor who admitted me to the hospital was the one to move me from Heparin to Coumadin. I’m very concerned about the INR for Coumadin not staying in range. I understand that it can take a while to regulate it, but if it’s going to get to be more of a problem as I get deeper into chemo, I think the change being sooner than later makes more sense. Right now, I”m more than a bit scared about doing chemo again with the Coumadin not stable yet. I’m going to try to give you a call in the next few days….just to chat about this more a little. We actually don’t live all THAT far away…..I’m just over in Marion/Cedar Rapids, IA. about an hour and a half from the Quad Cities. Sometime when I get through some of this chemo mess, maybe we can get over to Illinois to meet up in person.
Dear Kelley,
My heart goes out to you and your family. Your mom obviously made a lot of friends and many respected her as well. She will always be with those who she touched. I wish I could have had the chance to know her.
Julie T.
Kelly, I am fairly new to the boards, but have read some of your mom’s posts. Bless you for letting us all know about your mom and her final days. You sound like a wonderful and caring daughter and just know that your love for your mom shines through your every word.
Hugs and Blessings,
Iowa Girl
Julie T.Thanks Jason. I’ll try to get in touch with Patty. I forgot that she dealt with blood clots…far worse than my situation I think.
Julie
Kris….I’m so glad to hear that it looks like Mark is turning the corner. I know…..the gush of tears takes us all by surprise sometimes. I think we tend to push aside emotions to “get through” a rough patch…and then they come back to bite us later…sometimes years later. Been there. Take a deep breath, enjoy Mark getting his strength back….feed him whatever he wants (grin) and plan for the time when you can all do something fun together.
Hugs…Julie T
I have nothing to add to what the others have posted, other than you deserve a huge, huge hug for pressing doctors and advocating for your mom’s health. Blessings on you both.
Julie t.
David….sending big hugs to both you and Lisa. Tell her that I am thinking of her. I knew it might be a rough recovery from the hernia surgery as I had remembered my husband’s hernia repair. I hope that this is now the start of better things to come for you both. You’re both in our thoughts and prayers.
Julie T.
Samira, I can’t say that a CC patient should consume loads of sweet and sugar…..but they definitely need to check blood sugar more frequently and keep a log to show to the doctor, IMO….to make sure that the lows aren’t getting too low. You don’t want dizziness from low blood sugar for sure…and end up passed out or hurt from falling from dizziness. I check my blood sugar some days many more times than my doctor “wants” because I want to know what it’s doing on days that it doesn’t seem to act just quite right compared to the insulin i’m taking in. When I started seeing numbers too low, I pulled back on my insulin…thinking I was becoming less insulin resistant (after having lost 55 pounds over a year and a half). I was getting ready to talk to diabetic educators about all this when I was suddenly diagnosed. I didn’t eat a lot of excess sugary foods…but I did allow myself to have them more often as I had to get in something that would raise blood sugar and keep it at least in the normal range. I would tend toward fruit juices or fruit…..most of them raising blood sugar and yet you get in at least something of decent nutrition and not all junk food. Anyway, this was my personal experience….and may not be totally the case for your dad. Definitely bring it to the attention of the doctors if they don’t know and if they do, ask for a consultation with a diabetes specialist. Blood sugars in the 40s are nothing to take lightly.
Julie T.
Porter, I must have a stomach of cast iron.
))) After a heart attack in 2002, I was put on a 325 mg aspirin per day as well as Plavix (had a stent put in an artery…so had to take Plavix). Plavix was fairly new at the time…and hadn’t been studied longer than 3 months usage….but at the end of my 3 months, it had been tested for 6 months…so on we went….and then at 6 months….it was then okay for a year. Before we knew it…I was on Plavix until 2011….8 years after the heart attack. My new cardiologist took me off of it. I had been changed several years earlier from the 325 mg aspirin to the 81 mg baby aspirin…which I’ve been on since. In 2010, I took Advil for an extended time for a muscle pull….often on an empty stomach….which almost caused an ulcer. That was on top of the Aspirin and Plavix. A round of Prilosec and backing off the Advil fixed that problem.As to how I am feeling….physically….not so great…..emotionally…not so great. Right now, I”m having a trust issue with ANY doctor. After the lung blood clots, I’m having some difficulty breathing when I walk a ways…which I read is common and can last a very long time. I’m still dealing with trying to find some kind of compression for the leg that had the blood clot remaining….I developed Venous Stasis…..fluid into the tissues causing swelling. The support hose I got from a fitting place, slid down my leg in just a few hours. I gave up and this morning wrapped in ace bandages…though that isn’t great either….it sides down too. The place I got the hose has some new compression sleeve that velcros in place onto your leg….and that looks somewhat more promising. We’ll see. They didn’t have the right length though and had to order it. Gah! There may be a problem with my port…in that it was implanted incorrectly…long story there as well. It’s been accessed twice….and each time there were problems. It also stings like an electrical shock as the fluids and chemo was going into it…during that first chemo. They said it was because it was going in so fast….but an oncology nurse at the hospital said it shouldn’t do that…and the nurse today didn’t want to say one way or the other…but she winced and slightly shook her head…so apparently her answer was also that it shouldn’t do that through a port.
Emotionally,….. I’m a basket case again…..starting a new oncologist…had the
“tour” this morning with hubby. It’s a big cancer center here in town….they actually do clinical trials…though I’m sure nothing to do with our cancer. I “think” I’m going to get along with my new oncologist, …that’s “my” intent anyway…but I can’t help but be scared and worried after the blood clot event/incident. The oncologist “should” have recognized what was going on…..my GP diagnosed it in 3 minutes with my verbal description a week later. My husband’s GP was aghast that the oncologist hadn’t recognized the problem….but…..maybe he would have IF he’d bothered to come out to the chemo room to actually examine me himself. So….thus….I’m scared like crazy to do the next chemo….what’s coming next? Oh….and as far as the now “fired” oncologist…he came highly recommended…by other doctors…and a ton of people, alike. He’s supposed to be the smartest of all the oncs in town….and super compassionate…..spending “time” with his patients. I just never saw “that” doctor. I think he is maybe now too stretched thin trying to run this clinic all by himself…no other oncs with him as backups. The new place has assured me that IF the nurses push the “red” button…all available oncologists come running from their offices and mine will then stay with me if the event is serious enough. I can only hope that isn’t needed….I’m tired of these “events” and screw ups.Thanks for asking…..wish I could have more cheerful news….and maybe in another several weeks, I’ll feel better about things….once I get going with this new clinic and hopefully things go better. I tend to be a more emotional person…..strong..but emotional..so if things finally straighten out, and all I have to deal with is the chemo and not all this extra stuf..incisions not healing, port not installed right…can’t access port….blood clots….oncologist ignoring me or raising his voice when he does see me….I just might be able to deal with the chemo if that’s ALL I have to deal with. Believe me…if things are going better…I’ll be on here shouting it to the rooftops.
Iowa girl
Julie t.
