iowagirl
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Marion, I definitely need to prioritize right now and first on the list is to get myself hooked up with another oncologist……though there doesn’t seem to be any way to figure out if I’m going from the frying pan into the fire before I sign up. It’s like everyone is being closed lipped about the oncologists here in this town.
I’m spitting mad right now, but I know I must deal with getting a new oncologist first and take care of “me”.
Yes……I’m trying to remain as optimistic as I can about having some positive changes for this next year. I will find some moments of joy through all this. Right now, it’s just kind of tough. Once I have a new doctor and know someone is monitoring me and continuiing my treatment……I am sure I’ll feel better.
Julie
When I did Gem/Cis, about roumd 5, I noticed a definite, very loud high pitched ringing in my ears. I already had tinnitis, but nothing to that degree. It was about that time that I also noticed that my hearing wasn’t good in large groups, or rooms with background noise. Much as I love music, it really bugs me in restaurants now. The very high pitched noise quieted down, after 6 months or so, (I don’t remember the exact time line), but the difficulty hearing never has gone away. But, I can still hear……win-win?
Marion,
Thank you for your response….which as usual, is consise, to the point and even the “offer” of help brings tears to my eyes. It’s been a rough two weeks.
Right now, as I told Birdgette, my main goal is to find a different hematologist. I am not one to extract punishment for someone….and frankly, my energy needs to be expended elsewhere. Still, depending on just how this all plays out, I “may” take this further once I have my medical care straightened out.
I look back over a lot of the “stuff” like this that has happened before….you know the history of the blood clot and the awful oncologist who wouldn’t even come out to my chairside to check me over and then had the nurse send me home with pulmonary embolisms, and then the awufl bunch of problems with the doctors up at Mayo back last August (Now I get a phone call saying that they’re so sorry about the latest diagnosis …..but still no apology about any of the rest of it). The list goes on and on……..and the question is how does all this seem to happen to ME?….to US? Am I somehow causing this? But, then I realized there is one answer that is just right in front of my face. How did I get CC?…….how did I get MDS?…….I didn’t do anything to “ask” for this……it’s just plain dumb luck. I haven’t have options when getting these doctors……and I just got the unlucky draw…..somebody has to get the short end of the stick. Still…enough already.
I actually had an insurance patient case manager (who was assigned to me due to my complex medical problems) and when I told her the latest story with this doctor, out of her mouth came , “I can’t believe an oncologist would come out into the patient area to the chair and do what you said she did.” Immediately, my thoughts were…..dang….she doesn’t believe me.
It seems like the cards of the deck are stacked against the patient….because the doctors are “soooo” professional. Well…..they’re not…..and we’ve run into it over and over.
A word, “manipulation” was used by another doctor to describe what this oncology group has done by pulling together and refusing to treatment unless I stick with this doctor In other words, either I toe the line, and do what they say and don’t complain, then None of them will treat me……either sit down, shut up and do what we say, or you’re out.
Right now……I don’t know how much energy I have to fight back…..or if it is even smart to expend my energy doing that. I just want someone I can trust to take over my local health care. So………here I am. Sigh. We’ll see what comes next and I’ll post again when there’s anything new.
Brigitte,
I”m sure I “can” file a complaint about all this, but right now, my primary thoughts and actions are to find another oncologist/hematologist who will not only treat me (none from that group will now take me as they band together as a “practice”), but to find a “decent” hematologist who isn’t going to be #1 the same or worse than what I had and #2,Will actively try to keep me around as long as possible.
This could all be a blessing in disguise. I was talking to my cousin this afternoon, and it suddenly dawned on me that as difficult as it is, God may be directing me elsewhere to a Dr. who will do more for me in the future if/when things get bad.
I’m big on “signs” from above…..and as mad as I am…….in the long run, this could turn out to be the best for me. Meanwhile, it’s a real pain in the rear to try to work this out over the holidays…..The places are closed at noon on Friday for the holiday and don’t open again until Tuesday. So, with this time that I can’t be making appointments, I’m hoping to maybe find out a bit more about the other oncology group in town…..if there’s anything about individual doctors there that I can glean in the next several days.
Julie
Tia……I’m glad that Marion weighed in on this. There are often differing opinions, with treatment options and getting some top notch IR people to give their opinions as to treatment they can do would be absolutely something that would be good to pursue. At the same time, finding the cause of that anemia is pretty important and ought to be done at the same time to know exactly what you’re dealing with and how it might affect treatment and your mom’s health.
Julie
Tia,
Thank you for your reply to my post. I had to come over here to read the two different diagnosises for your mom….and I have to say that they are definitely night and day.
A couple notes i might be able to add with my newly learned into on blood transfusions, is:
1. If a LOT of transfusions are necessary (packed red blood cells), then the body can go into iron oveerload, which is a problem to fix.
2. Transfusions can cause an allergic reaction….or a reaction to antibodies in the donor blood which can make the recepient sick and make the transfused blood not last as long….the body can go through it way too fast.3. If the anemia might be caused by previous chemo, ….that is….damage to the bone marrow caused by chemo…..then yet, more chemo could end up causing more damage. If the anemia is caused because of a problem in the bone marrow at all…..chemo might make that worse even if it wasn’t caused initially by chemo.
Have they suggested ?……1. a Periferal Blood Smear or 2. Bone marrow biopsy to look into the bone marrow as the cause.
I’m assuming here that they’ve run tests up the wazoo already to try to find the cause of the anemia and they’ve eliminated possible sources of internal bleeding (like colon).
That’s probably not a very “medical” explaination, pretty simplistic but the best I can explain right now……., but it may give you a little insight as to why a doctor wouldn’t want to rely on transfusions or maybe do a chemo until they know why that anemia is there.
I’m sure if someone else sees this who has more medical expertise, they might have some thoughts as well.
I
Have now found out why I wasn’t getting an answer about swiching to a different hematologist in the local group. My GP’s office called the hematologist yesterday, and they had no record of any more appts for me…..including a blood count draw I need done once a week to monitor what this drug is doing. My GP’s office pretty much seems to have shamed them into making an appt for me for those labs next Tuesday, but with the same doctor. So, today, I was wondering who was the new oncologist I would get transfered to…..and the “manager” had the gall to tell me that there would not be any other oncologist ……that the practice has decided that either I stay with the Dr. who has treated me so poorly, or I have to go elsewhere. But, they were going to leave me hanging mid treatment with no oncology back up in case I have problems in the meantime. All that is bad enough…….but on top of it, they didn’t even have the balls enough to tell me that they were dumping me and leaving me without anyone monitoring the effects of this drug after last Tuesday. At least now, with pressure from my GP’s office, I have coverage through next Tuesday , but the pressure is now on to get something else worked out with another entirely different group. There is one other group in town, which doesn’t have a great reputation in general, and I know of at least one oncologist there I wouldn’t send my worst enemy to. Out of the group …..there “could” be one who might be “okay”, but there is no way of knowing without going to see him. I”m waiting right now to hear from my GP’s office……to see if she can give me any insight. Right now, I”m so mad I could just spit….but I”m also just plain “tired” of fighting for decent health care and to be treated respectfully. The whole story is very loong….though I’ve mentioned a few things above…..but this latest problem began with two very compassionate nurses who had no idea what they were about to unleash when they asked me if I’d like them to go and talk to the oncologist again about the possibility of a unit of blood before Christmas when my hemoglobin was 7.3. This doctor came flying out of her office with a bee up her bonnet….and proceeded to ignore my rights to privacy and berate me and lecture me loudly in an open area chemo room. There was no excuse for it. First, I need to get another oncologist/hematologist lined up for this damned MDS treatment. and fast…..and then IF I have any energy left….I will decide what complaints to lodge with the chemo center/hospital here. At the very least, she violated my privacy big time……but she also was far from treating me with any compassion and decency. I need to now find out where I can go that my insurance is accepted….at least for the next 4 months until I can get off this Medicare Advantage Plan (I had no choice because of disability) and go on a regular medicare plan with a good supplement.
Christmas was kind of a bummer…….my hemogloboin was at 7.3 and the oncologist would not break her hard and fast rule to do a red blood cell transfusion on the Friday before the weekend even though we knew that the number would continue to fall due to the chemo I’d gotten all week. I ended up sleeping and feeling horrible all weekend…..I was there in body, but not much in spirit. Had a HUGE altercation with the oncologist that Thursday before Christmas and I requested a change in oncologist. She had come out of her office and out to the open chemo chairs where I was (only curtains) and proceeded to berate me at the top of her voice, talking to me like I was two years old. Haven’t gotten the changeover done yet…..the holidays have apparently hung up things regarding paperwork, but we pushed some today…..and it was obvious nobody had done anything either.
Went in on Tuesday (yesterday) for my weekly blood count, and of course, it was 6.8….and I’d been light headed even sitting down for several days. Suddenly, there was a big rush to get me to the transfusion place because I “NEEDED” a transfusion…..but only one unit. The Nadir for this drug is day 10-17…..so the lowest points in coiunts will be today through a week from now. That one unit isn’t going to last long,….i’ts probably half eaten up right now. Mayo had told us that the cutoff for red blood cells was 7.0 Hemoglobin, HOWEVER….some people do not do well at 7 and need the cutoff to be a little higher. I am going to try to talk to the Mayo hematologist right after the holidays. A lot of them are gone on vacation right now and I just don’t care now. If it had been any other weekend……I would have just sucked it up and tried to power through….and I guess I did try anyway…..but we still ended up in the parking lot of the ER on an aborted trip to the hospital. We called my GP who advised me to go back home based on a change in how I felt suddenly (after dry heaving).
The port has been “okay”…..they left it accessed the entire week, though most days they kept it uncovered during the chemo. That kept me from having to b e reaccessed every day last week. The upshot of that…..was that I still got two very big welt type blisters from the adhesive allergy. Even the spray on barrier didn’t help. It is now completely uncovered and was accessed for the first time since surgery a week ago Monday……when they did the transfusion yesterday. The gal there was absolutely wonderful, though I still hate that poke……it’s pretty hard to take and stings for a while. I had forgotten about that part. It does start bothering me later each evening…..partially because of the blister (about 2 inches long two ways) and just the incision. The surgeon really sewed it down into my chest very tightly……which hurts when I cross over with my right arm….but at least the port doesn’t move around when it gets accessed. The transfusion nurse was very pleased with it.
I do feel some better though still very short of breath. Tonight, I have a small temp….99.8 degrees…probably from the transfusion. That will go away once I take a hydrocodone. My heart is jumping around with an irregular beat , but they don’t seem very concerned about that. If I’d felt last weekend like i do right now……it would have been a lot nicer Christmas. I’m mad as hell at that oncologist on so many levels. There have been more comments made (probably by people who shouldn’t have said anything) that indicates that this isn’t just a problem I’m having with her…..that this is the way she is. She lacks compassion, but also just plain common decency.
Julie
Lainy…..temp is down to 100.6…..the cutting off point for contacting the doctors/hospital. We are leaving here soon anyway to go in for my day 2 treatment. This could be something to do with the port surgery….or something to do with the platelet transfusion?????? My appt is at 1:15 for that. Wish you had a magic wand too. Will email you privately later.
Love, Julie
By about 10:30 p.m.last night, I was in some considerable pain….and difficulty swallowing (it hurt…pretty much in the area of the jugglar vein, not the port entry. This morning, I had several drinks and it was pretty much okay again….tolerable anyway. Howeer, I felt likke a MAC truck had hit me when I tried to get out of bed….and I was “cold”. Came out here to the kitchen and took my temp….101.3. The dischange papers said to get in touch with them if temp went over 100.6…..so looks like I will be calling down to the hopsital soon…or cancer center……and probably going down there earlier than my 1:15 appt. It’s not all that far away. They’ll probably want to do blood labs to look for an infection. CRAP! I just finished some breakfast and it didn’t hurt to swallow, so at least that has settled down. And…now that I’ve eaten, I don’t feel so cold either, so maybe the temp is coming down? Still going to call them in a bit. Nothing ever seems to be “easy”.
We started out the day getting up at 5;30 a.m…….down to the hospital at 7 a.m. to the “Healing Center” to do the platelet transfusion. After several IV attempts in the back of my right hand, they went for the crook of my left arm where the lab had just gotten access easily. That is a wonky place for an IV, but worked great to get the transfusion. Then off to the Cath Lab to have an IR guy put in the port. They used the IV in the crook of my arm for meds…..and before they could even start…..it wasn’t working right…and then it came out of the vein. So, the IR guy came around, and did some kind of “puncture” procedure using ultrasound to guide him into a deep vein in my upper arm. The port proceudre went forward. But, I am apparently getting very bruised in the area of the surgery. I haven’t looked for myself yet. After the port…I had recovery for about an hour and a half…and was seriously behind schedule. They wheeled me over to the Cancer Center…2 and a half hours after my appt time……but after a short wait….we saw and talked to the doctor and then got started on the infusions. It was 10-20 min of a drug Zofran for nausea and then 20 min to infuse the VIDAZA chemo drug. It was decided that we would leave the port accessed as much as possible this week…..so that ithere would be minimal pokes to the area since it is so bruised and sore. They tried a new spray first on my skin before applying the bandaging . They spray is supposed to make a barrior between the skin and the adhesive. We’ll see how it works, but they said that they used it on another gal who has severe adhesive allergies like I do (she blisters as well) and they had no problem. There is one side of the bandage that isn’t sticking well, but we will have to address that tomorrow. I may have to add a strip of tape when I go to bed, but I’d rather not because the burning will wake me up. We finally left there at 5:30 pm. I’m so tired right now and am hurting. I think the IR guy sewed the port down pretty securiely to try to keep it from rolling and turning 90 degrees on them when they try to access it. But…all that sewing added to the discomfort now. He also was going to try to put the port a little more shallow than the first guy did, because it was so deep under the skin tissue. . It was a very long day….and a very emotional day. Just glad it is over. So glad we had leftovers from last night. Comfort food.
Thanks everyone…and yes, Marion, I can feel the tons of love….and support too. Son and family were here tonight…..5 year old and I frosted and decorated cookies before supper. It was a good distraction. I managed to put together a meat loaf and pulled a potato casserole out of the freezer and DIL put it all together on the table. But, when it was time for them to leave, my son and I both had some problems with tears. It’s so hard.
I will post when the day is over.
Thank you all for the encouragement and prayers. Love you all.
Julie
Brigitte,
At 7 a.m. tomorrow, (Monday the 19th) I will get transfusions of platelets to boost the numbers from 28K to whatever is necessary for surgery. Then at 10:30 a.m., I will be taken to put in a port again After that and some recovery time, I’ll be wheeled over to the adjoining cancer center to get the first infusion.
The drug, Vidaza, starts tomorrow and will be an infusion every day this week. Then the next Tuesday, 27th, I go back to have blood counts checked because as low as my counts are now, the drug is going to push them much lower. I will need transfusions during much of this treatment. probably on a weekly basis The counts may not , and probably won’t, come back up on their own. The idea is to kill off the bad cells and irregularly formed cells….and unfortunately, that is true for most all of the red, white and platelets……and then “tease” the bone marrow to produce some more normal cells that can take over for a while if I get a remission.
Supposedly the worst and potentially dangerous side effect is to be the low blood counts. Besides that….fatigue (probably also from low red blood cells) and constipation. I’ve read some anectodal stories from other patients that say they had nausea, vomiting, and a list of other side effects, but I can deal with that. It’s supposed to be considerably “easier” on the body than the Gem/Cis I did 2 and a half years ago after the first liver resection.
I’m a “little” terrified to get a port again…..had one for the chemo after my first resection…..and immediately got a blood clot in my leg that sprayed my lungs as well. I know it’s better if I can be up and about, but unfortunately, getting this drug is going to lower my red blood cells more than they are and I’m already very short of breath (hemaglobin was 8.3 on Friday night).
Meanwhile, I”m trying to get a few Christmas things done…..wrapping gifts and getting the last of them purchased (mostly on line). I think I have one more to get and that is just a gift certificate from Amazon which I can print off here at home. I’m “trying” to do a couple things with the 5 year old grandson….we have a gingerbread house to decorate, which I’m hoping we can do today. The weather hasn’t been cooperating here in Iowa for getting together. Maybe today.
Thank you for thinking of me. There’s a 50% chance this will work for a remission for a while….please say some prayers or keep me in your thoughts.
Julie
Shellie,
I don’t know if there is a simple answer to your question, but I will try to answer it nonetheless.
I was diagnosed in Jan 2014 with Intrahepatic Bile Duct Cancer and had a resection a month later. In May, I began Gem/Cis with the intent to do 6 rounds as I was being pushed to do. Actually, they said 4-6 rounds, but being the person I am, ….they “said” 6 rounds, so it seemed to me that was what they wanted me to do. Chemo ended on Aug 27, 2014.
In 2015, about summertime, I made note to the oncologist that the numbers were just under normal mostly……and the response was that, “We might have damaged your bone marrow with the chemo.” But, nothing more came of that. I was told by various other professionals that this was my “new normal”.
It wasn’t until about September 1 this year that it was apparent something wasn’t right….the platelets and hemoglobin had dropped and various blood tests done for trips to the ER in September for apparently unrelated medical problems showed a continuing drop in both of them….and by the end of Oct, a huge problem was apparent with the platelets at 48K and hemoglobin having dropped 2 full poins from an already lower than normal number.
As to this being common with CC….I can’t tell you that. I think it is a pretty rare thing that can happen with any cancer that is treated with chemo that depresses the bone marrow and bloow counts.
What were your fiance’s numbers like during the chemo break? Did they go backk up into the normal range at all? Mine did ….but only occasionally.
I’m sorry that this has scared you……..but if it can happen to one of us….it can happen to more and as such, we all need to be on the watch. However, in my case, the chemo was an optional thing……the tumor had been removed and the chemo was for potentially a mop up type situation in case any cells got loose into my body. In your fiance’s case, the options are more limited…..and from what I gather, he is getting chemo as actual treatment to try to keep the cancer at bay. He has to do “something”. In my case, as an optional treatment, the risk of untreatable ICC returning was less than the risk of this terminal blood cancer. I should either never have done it at all….or stopped at 4 rounds. But, hindsight it 20-20. There is no way of knowing.
If you have any other questions, let me know….and I’ll try to answer.
