January 15, 2017 at 8:22 pm #93556positivityParticipant
Way to go! Don’t put up with disrespect from doctors or treating you like a number, not a person. If you are dissatisfied and it is compromising your health and your psychological well being, find another group. I had to turn down two doctors for unfavorable communication or non-desirable treatment. Some can be negative communication or discouraging, and I would not want treatment for my mom from that sort of a team.
Julie, do the best for you!! Please get a few treatment options, work on strong nutrition and mental well being as well.January 4, 2017 at 5:44 am #93555
Julie…..yeah on the white blood cells. Fingers crossed for stable.
MarionJanuary 4, 2017 at 5:03 am #93554
Blood counts today:
Hemoglobin at 7.4
Platelets at 11,000 (11K)
White blood cells at 7 (holding in the middle of nomral)
Got a transfusion of platelets this afternoon and go back next Monday for another set of blood counts. I imagine the Hemoglobin will be ready for a transfusion then as well. Just hoping that the white blood cells at least stay stable. This is scary stuff.
JulieJanuary 3, 2017 at 11:18 am #93553middlesister1Moderator
Chemo is tolerated differently by different by patients. My mother ( was 73 then) went through 3 cycles of Gem/Cis and her hair did thin, but never to the point she needed a wig (kept eyelashes and eye brows.). She was sick the first cycle, but they adjusted her fluids and meds (added more steroids) and during the next 2 cycles it was just fatigue. Also, during the first cycle she still wasn’t fully recovered from surgery, so we’re pretty sure that added to the difficulties.
CatherineJanuary 3, 2017 at 1:02 am #93552
Hair: I was told by two oncologists, two different things. One said that my hair would “slightly thin” and the other said it would all fall out, but only the scalp hair. Both were wrong. I ended up with several strands (and I do mean strands) of hair on my hair that my hairdresser trimmed off very short to be the same length as the new hair coming back in. I lost all my eyelashes, hair under my arms, on my arms, most of my eyebrows (a couple individual hairs on each side), and all the hair where the sun doesn’t shine. The hair all eventually grew back……the hair on my head “maybe” a bit thicker, but not much….and it was the same, very fine, thin hair as ever. Couldn’t even get a break on that…..was hoping for a throw back to my mom’s coarser, thicker and wavy hair. No such luck. It started regrowing even before the actual end of the 6 rounds of chemo, but I did take a week off between the 5th and 6th rounds, so maybe that is why. I had a wig or two…..and used them sometimes, but hated them as they did not fit my head shape…..no wig will….they slip up in the back on me. Hats and scarves do the same things, so you can imagine they weren’t an optimal choice either. I sometimes wore a winter hat even at home inside because it was winter and I was just “cold” because of lack of hair. If I were to go through that again (I won’t be….but IF), I’d screw the wigs and just go the way my head was…naked.
SIck: Yes, I was sick. I had dry heaving every morning and nausea usually every afternoon or more. I slept a LOT. It seems that I must have run a temp also sometimes, but I’m not 100% on that part anymore because it was 2 and a half years ago.
JulieJanuary 2, 2017 at 8:48 pm #93551whatnowParticipant
During chemo (gem/cis) were you ever sick or lose your hair?
JanetJanuary 1, 2017 at 2:08 am #93550
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.
JulieDecember 31, 2016 at 9:46 pm #93549
Julie…..first and foremost you need to save yourself and find another oncologist; one that treats you with decency and respect, as that is what you deserve.
Once completed, you and I can work on a letter to the previous oncology group. It may not change their behavior, but it will have an impact and perhaps some other patient will be spared what you had to endure.
I am counting on the year 2017 to bring about changes for the better.
Hugs and love,
MarionDecember 31, 2016 at 6:20 pm #93548bgmat48Participant
Julie, sending you all my love, stay strong, take care of yourself. Wish I could help but if you want to talk e-mail me and I will give you my phone number. firstname.lastname@example.orgDecember 31, 2016 at 2:58 am #93547
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.December 31, 2016 at 2:39 am #93546
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.
JulieDecember 30, 2016 at 6:48 pm #93545
Julie…these are the type of problems us advocates like to know about. Let me know if I can be of help to you.
MarionDecember 30, 2016 at 6:21 pm #93544bgmat48Participant
Julie, I am so sorry you have been treated so badly by the oncologist. Can you file a complaint with the patient advocacy? It is just not right! Patients have rights and privacy is one of the most important! I am sorry you are feeling so ill and have to fight for receiving care. Thinking of you xxx
BrigitteDecember 30, 2016 at 4:18 am #93543positivityParticipant
I understand what you are going through, and you have incredible strength.
My mom was diagnosed with CC over a month ago and hers is the reverse of you. She has a serious case of anemia before the CC and we still need to determine source. We may need to see another hematologist. Read my other posts and you will see the status of CC treatment. Read the last post of 2 different oncologist opinions and it makes you wonder which one is more accurate or beneficial. At one point this year my mom had 3 transfusions in one month, and currently able to do well with a 8.4 hemoglobin which will always need to be monitored. I am tired of doctors comments of CC being an awful tumor or in a bad location. I totally understand the sensitivity and have gone through the strong emotions also. We are taking it a day at a time, and for sure if you have the will, strength and see the daily joys, enjoy the moments. We must from time to time take our minds away from this and focus on what makes you happy. Hopefully this will also be overcome for you.December 29, 2016 at 10:24 pm #93542
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.
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