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    Old 06-02-2006, 09:13 PM   #1
    christy217
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    Question Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Hey guys, I wanted to start my own thread for a few good questions I had and to let you guys know why I was returning to work and to see what you guys thought about this and what not:

    I will be starting chemo on Monday-Oxalioplation, 5FU, Leucovorian (sp) I will get 4 hours there, then come home with a 46 hour pump, which I will go back on Wednesday to have disconnected, then the port flushed, then Thursday I will go back for a shot, the following Monday come back for follow up blood work. I have been given about a two page list of side affects for each of the three individual chemos. They recommend that I have 6 months of this chemo, every other Monday for a total of 12 cycles, 600 hours, which is a lot of chemo to me . My mom was deathly ill from this all the time. I know it's no joke. I know everyone handles it differently. I am prone to nausea from everything. I am going between 7-11 times a day regardless anyways since the total colectomy, so this isn't going to make it better. My dad underwent chemo for his lung ca and only had a few side affects and that was at the very end of his treatment, this man is on his 5th malignancy, I don't think anything is going to kill him, he will outlive me, he just turned 71 yesterday.

    Anywho, not trying to get off on a rant-what did you experience your first time you had chemo? I know some say they don't feel anything during, it's usually after, secondly, what are your first complaints usually? I know it's a cumculative collateral affect overall, so that might be hard to answer.

    JOB: I work for a government contractor, I have Excellent benefits, in that, my copay is 10 bucks, my docs are all in network, my surgery was 50K and I only had to pay 20 bucks, my company pays for STD and LTD for me, and I've been on STD since the beg of Feb~around 2/8, I just recently converted to LTD. I talked to my HR lady today and she stated that they only have to guarantee me a position for 13 weeks? I've been employed there for 4 years, I thought they at least have to hold my position longer than that? A few weeks ago my boss asked me for a position description but stated he wasn't interested in hiring anyone, but HR wanted it, he told me to take all the time I need to come in coming back, I truly helped him up to the point of my surgery which was 3/27. I don't want to extend more time than necessary in coming back to work because of my benefits, we just purchased a new house on 2/17-we had been building this for over a year, I was diagnosed 2/23-Cigna, my STD and LTD carrier has always been paying my employer the amounts of my disability, they paid my income wages 100% the first 6 wks, 70% 7-13 weeks and then LTD is 60%, beginning on 91st day, own occupation for 24 months-I don't know what that means-does this mean I can be on LTD for 2 years? Anywho Cigna sends me this packet in the mail and wants me to apply for SSD (Social Security Disability) it's a requirement of their filings for all LTD receiptients apparently. I am baffled at what to do. I do trust my boss and he suggested when I return, that I work at home as much as possible.

    In the middle of all of this, as I stated, I work for a government contractor (85% of our local economy is such), we get contracts for jobs, in lots, like 70 employees on one contract for 5 years as an example, with my contract, it's for 5 years, it's 3 employees, me, my boss, and another management guy. The contract is up 6-30-06. Two things can happen, we could not get it and I could get laid off, and have to cobra life insurance and health benefits at 430+ per month, or we could get it, and become a subcontractor, which means I would still work at the company I am at, but not for them, for a smaller company, have to change health insurance providers and pay twice as much. So I am severely worried about a multitude of things and feel I need to get my A$$ back to work ASAP.

    If I have to put chemo on hold, I have to. If chemo gets to the point where it is causing me too much sickness, I will stop anyway, I've told them that, I don't want to be sick constantly. I've seen it too much with my mom and what she went through. Don't get me wrong, I have a will to live, and I am not negative, but for me it is quality over quanity because I am not mentally strong for anything else.

    Insurance-As luck would have it, I have 165K through work in coverage, when they had open enrollment last year, I upped it to 360K, our house was 331K, we put the contract on it last March and you can only change stuff during open enrollment in Dec, and since I can't legally marry my partner, they equate why you need such "monies" in large amounts, if you have no legal spouses or dependents or real estate and we didn't have the new house yet, so I had to wait for additional forms. I kept calling and calling for additional forms in January, and when they finally sent them to me in February, I was already diagnosed with anemia, which lead to CA, and they wouldn't raise the policy amount of course, so now I worry, should something happen to me, on chemo, or not, or anything else, etc., I don't have enough life coverage-have any of you run into this? Do you know what the waiting period is for life term coverage is once you've had cancer? I wonder if it makes a difference if it is genetic or not, I'll have to ask my genetic counselor when I go to see her next week.

    As always you guys are great, thanks in advance and sorry for the novel!

     
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    Old 06-03-2006, 07:01 PM   #2
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Christy:
    You DO want to apply for SSD NOW. Yeah, it's Cigna's way of getting out of having to pay you so much (I have it too!!) So I applied and Social Security automatically rejects almost EVERYONE first go around. I was told they were lucky to approve me second go around.... and by NO MEANS am I taking advantage... I would love nothing more than to be able to go back to work and make what I used to. Reality is, sometimes, it just doesn't work this way.

    Once you are rejected the first time, you turn it over to a Cigna representative, and they fight for you. It's better to get the coverage now because they base it on 3 years of earnings or something and you will end up with less covered amount if you have a $0 year factored in. I know this sounds horrific, but try not to talk with the Disability people from Cigna when they call... their sole mission is to get you kicked from receiving benefits. I know this sounds terrible and I said, "no way" the first time I heard this. But it's true. Just tell them your doctors names and addresses, that's it. They try to be nice to you sometimes to get more out of you to admit that you "are feeling better." (Yeah better for today, but nowhere close enough to go back to work). It sounds like you are trying to pull a fast one, but it is the insurance co that is looking after their bottom dollar.

    I have three physicians that write in their charts ALL THE TIME that I am NOT ready to return to work. They get copies of my records from my doctors ALL THE TIME. Yet Cigna continues to harrass me and them for information.

    Sorry for the ramble Christy. Talk soon,
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    Last edited by CancerDad; 06-03-2006 at 07:09 PM.

     
    Old 06-03-2006, 08:30 PM   #3
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Christy:
    A couple more thoughts... it's important to get SS application going because once approved, you have 2 years before you are entitled to SSD health insurance *Medicare*. I don't know if you are on your partner's insurance, but something to consider, because if you have a lapse in coverage, then they may consider this a pre-existing condition. Like I said in my last post, better to plan for the worst, just in case you cannot return to your current work.

    Also, remember, as SOON AS YOU TELL CIGNA that you are going back, your check stops coming. They don't give you time to find a job (if necessary), or ease back into a full schedule. Social Security does though.

    As for your employment status, your employer is right... they, like my company and many others, have gotten around laws by using your FMLA in your short term disability, which covers their arses so they don't need to hold your job open longer than what you had calculated in your situation... I think you said 12 weeks into LTD.

    As for changing your life insurance... good luck in finding a company to cover you without charging a fortune. ONCE you have that dx of Ca, you are up a creek. I had been considering increasing my policy too right before my diagnosis. Now, forget about it. I have unofficially been told that you need to be cancer free for 5 years, and even then, they charge increased rates. If you find out, would you please let know? Thanks.

    Lastly, I was the only "bread winner" in our family. My wife stayed at home with the kids. Well, we had some credit card debt, which was no problem for me when I was employed and receiving my entire salary. But once I was on STD, I was making a heck of a lot less. So I called the credit companies to ask if they had some sort of program that would allow me to postpone payments a couple months. I was naive and didn't think anything of it when I told them that I was fighting cancer. Well, they don't care and see this as an opportunity to hose you. The next thing I knew after telling them and trying to negotiate something, they increased my nice low APR's (without telling me) to 30%APR... I had a near flawless credit record (FICO score) and now it stinks. Although, it's improving since I wised up!

    Anyway, I can't think of the other things I wanted to tell you right now, but will remember eventually and post again... I hope this helps. Let me know if I wasn't clear enough on an area.

    Warm regards,
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    Old 06-04-2006, 02:11 AM   #4
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    [QUOTE=christy217]

    I will be starting chemo on Monday-Oxalioplation, 5FU, Leucovorian (sp) I will get 4 hours there, then come home with a 46 hour pump, which I will go back on Wednesday to have disconnected, then the port flushed, then Thursday I will go back for a shot, the following Monday come back for follow up blood work. I have been given about a two page list of side affects for each of the three individual chemos. They recommend that I have 6 months of this chemo, every other Monday for a total of 12 cycles, 600 hours, which is a lot of chemo to me . My mom was deathly ill from this all the time. I know it's no joke. I know everyone handles it differently. I am prone to nausea from everything. I am going between 7-11 times a day regardless anyways since the total colectomy, so this isn't going to make it better. My dad underwent chemo for his lung ca and only had a few side affects and that was at the very end of his treatment, this man is on his 5th malignancy, I don't think anything is going to kill him, he will outlive me, he just turned 71 yesterday.

    QUOTE]


    Hi Christy

    My husband had same type of chemo as yourself except he had first 6 cycles between colon and liver resection and last 6 cycles after liver resec/radiotherapy.

    His experience from the first 6 cycles was nausea and diarhea and some hand and throat tingling stuff. Strong meds resolved it in most cases and his neurapathy (sp?) eased off after getting disconnected each time.

    His one enduring memory of chemo is the endless conveyor belt of blood tests, oncology assessments, getting hooked up, getting disconnected, getting flushed, and starting all over again. At one point he was either at a blood clinic, chemo clinic or other hospital twice a week.
    For his last 6 cycles we decided to take a bit more control ourselves and made the clinics and doctors work around us. So, in the end the routine worked out as follows:-

    Weds - blood test at our local doctors who sent results off to oncologist at the hospital.
    Friday - visit oncologist for assessment to see if he could take another dose.
    Same day - chemo clinic in the afternoon for infusion (which ususally took about 4 hours so it meant a whole day at the hospital including the assessment.
    Sunday - i would disconnect at home and flush through. The nurses taught me how to do it and equipped me with the syringes/needles/swabs/tapes/needle bin to do it.
    The following week was then free and then would start again the following Weds.
    End result was for each fortnight, one quick trip for the blood test and an all dayer at the hospital. Much better than 2 visits every week and we coped quite well.

    Could you perhaps disconnect at home if your partner or a willing friend would help? It would help cut down on hospital time which is a real drain on your energy.

    Regards to all
    ktee

     
    Old 06-04-2006, 11:58 AM   #5
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    christy, my daughter (age 23, stage 3 rectal) had the exact chemo that you will have. she had 6 treatments before surgery and 8 treatments post op. we found that a drip of calcium/magnesium right before starting the chemo helped her alot with the "tingles". that added another hour on to the time we spent there. the last 2 treatments, they also gave her that drip after the chemo, too. we spent all day there! we had a home infusion company that would show up at the end of the chemo session to hook my daughter up to the 5FU pump. they would then come out the next day to her college dorm (she just graduated-quite an accomplishment!) and hook up her leucovorin and change the 5FU cassette. the next day they would come to unhook her. we have aetna and they covered the home infusion, no problem. it makes life easier than going back and forth to where you have treatment.
    also, she had some significant nausea after the first treatment so the doc put her on EMEND and ZOFRAN . the 2 drugs work together and helped alot. she didn't feel great the first few days after treatment but was able to function.
    everyone's reaction to the chemo is different. hopefully, you will be one of the lucky ones and do really well. you certainly sound like you have lots of energy for the fight ahead!

    lots of good luck to you. susan

     
    Old 06-05-2006, 01:27 PM   #6
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Thanks once again for all the replies, and sorry for the blimey novel.

    I am just home from my first treatment, I have the pump with me. I feel worn out a little. I felt fine until the remainder of the Oxaliplatin went in and then the Leucovorin, then the 5FU. My body feels like it's been through a washing machine, I guess you could say. My stomach is upset, but not to the point of nausea or vomitting and they gave me pre-med stuff before they started the chemo.

    CD-It is so good to hear from someone that is going through, unfortunately , in the same situation with Cigna. Do you remember if the company you dealt with for SSD which was provided by Cigna, was called Advantage 2000 or something? I thought when they first called, they were trying to sell me something, that's just an odd name for a company IMO. I totally agree 10x over that you need to be on disability, it took my mom forever to get approved for it and when she finally did, granted it was 8 years ago, it was only 435.00 a month, and this was 1 month before she died. It was such a battle with them. Gosh, CD, I hope you know what a vital part of this board you are to us. I am so sorry you, your wife, and your family have to go through this terrible thing, however, I must say, you're constant positive outlook has inspired me to try and step out of my realistic viewpoints (which can be negative sometimes more than often) and be more positive. My mother was a positive person, and I think that helped her significantly. Regarding insurance-I've heard the same as you, my sister and I have both checked, repeatedly for policies, it's a 5 year disclamier across the board. My sister does, however, have this insurance called Cancer Insurance-it is a type of insurance that companies like Afflac offer, she has her through a private agent, but if her or her husband are diagnosed with Ca-as his parents both died of ca, they get 25K automatically to assist with treatments, etc., as long as it's not skin cancer. Ironically, I had an appt and requested quotes for this in January of 2006, they need to do the paramedical exam 30 days after quote and then freakin' Feb came around-same sit. as you.

    Ktee-Sorry to hear about your hubby, it sounds like I am on the same schedule that your hubby was, with regard to a better schedule that is, it makes it so much better, when you're not spending the days you do feel better in a hospital or clinic setting. How are you holding up during all of this?

    Susan-I am also sorry to hear about your daughter, but good for her that she finished up her degree, what an amazing accomplishment for her, good for her! Thanks for the nausea heads up, I think it's hitting me now, I have some phenegran and that usually works for me, so I am going to try that, but if it doesn't work I will suggest the other stuff. BTW, how are you holding up during all of this?

    Thanks again to all of you guys! You're amazing!

     
    Old 06-05-2006, 01:45 PM   #7
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Oh, I forgot to mention this, I don't know how, my memory really is going lately, and I am not saying this to be comical. Anywho, when I was there, they did the pre-chemo blood draws to get baseline levels on me and my hemoglobin and hematocrit was low, so I am yet anemic again.

    It was 30 and 9 now I know it isn't that low, but last time it got down to 6 and 22 because the polyp was bleeding and that's how they discovered it the first time. My oncologist didn't have much to say about this, so I made an appt to follow up with my surgeon, as we previously discussed, since he did the colectomy, he will do the first "scope" to follow up and then I can go back to my regular GI doc. I have an appt next Tuesday at 9:45.

    I can't help but to jump to conclusions at this because I've been having some rectal pressure almost like a bearing down inside my rectum, when I use the bathroom and sometimes, just because, also, I think I have passed some blood in my stool, but as most of you know, they're not very formed, so it's hard to tell, I see it when I wipe sometimes, but then I am like, did I eat something red? I've got some pain on my sides off and on, not too frequent, and TMI warning, when we're intimate, I have pain on the left side of my pelvis and vagina. So of course I am wondering, I also go see the genetist this week for testing, so I will let you guys know how that pans out, LeslieTOO and I can share input on that for sure!

     
    Old 06-05-2006, 03:16 PM   #8
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    christy,

    the nurses at my onc's ofc said that low blood counts are normal. my H&H was something like 12/37. It's very routine to have low blood counts during chemo so don't let it bother you too much. Talk to your doc if it becomes more concerning to you.

     
    Old 06-05-2006, 06:10 PM   #9
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Christy:
    Yes, it was Advantage 2000 LOL! I had the same thoughts when they contacted me. And then I thougt--Cigna, "cheap bas!ard$!" But they did truly help with getting me approved-- they were surprised as they expected a fight, but I was approved no problem second go around. I guess I am one of the lucky ones-- if there is luck in all of this crap lol. As I am still utilizing services 2 years later. I also am now qualified for and participate in the A and B health policies, and pharmaceutical plan.

    But as I said, Cigna has been a pain in my arse with their constant follow-up. They got off paying a bundle because I was approved so quickly by Social Security, which BTW they take any retroactive payments that you receive from SSD. Anyway, once you get through with A2000, try to give your LTD company the LEAST amount of information possible. Tell them you are not feeling well, and that they can contact your doctors... and give their names and authorize release of your records. Like I said in my other post, I was naive in the beginning, thinking that they were calling because they were ACTUALLY concerned about how I was doing on chemo and with my troubled surgeries, etc.!!!! But I'm sure you have heard it all as you have been through it with your mom. Just a reminder not to fall in the traps!

    Chemo affects people in such different ways. That's why I didn't respond to your post before you went for chemo b/c I didn't want you to be scared or draw on my experience. Sorry, I'll risk it and tell you now... if you Don't want to hear it, STOP READING HERE!!!
    I was very numb in the beginning. For me, I got sicker as I went through it each time. It was almost like a knee-jerk reaction. Thinking about the Cancer Center or literally hearing my nurse's voice on her voicemail would cause me to sweat and get unbelievable chills and vomit. I would be drenched in sweat. They had NO idea why I would shake throughout, with chills so bad my teeth would literally chatter. I didn't want to be negative for you, because like I said, EVERYONE has a different experience. But, my advice would be if this happens to you, DON'T HESITATE to take the "stronger" anti-emetics... compazine, Zofran, and other new ones on the market. And whatever other meds you need. Hang in there.

    OK TO READ NOW

    Thanks for saying the nice things about me BTW. Please don't hesitate to ask any questions... for any of us here. I'd be happy to tell you whatever.

    Fondly,
    CancerDad
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    Old 06-06-2006, 07:49 AM   #10
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Quote:
    Originally Posted by Phil in Az
    christy,

    the nurses at my onc's ofc said that low blood counts are normal. my H&H was something like 12/37. It's very routine to have low blood counts during chemo so don't let it bother you too much. Talk to your doc if it becomes more concerning to you.

    Phil-I am sorry I didn't make it clear in my post, I know the H&H will go down because of chemo, but the thing is, they took this before chemo and this how they found my cancer initially. My polyp was bleeding and I was losing blood through the stool. Sorry for any confusion. I am still going to go see my doc just to be on the safe side. DH-I did go a few times yesterday, and it burned, but now I seem to be going less frequently, so I think I got the opposite now.

    CD-I am going to send in my papers. I understand for you not responding to my post earlier too, thanks for the info though. I was pretty optimistic about being on it, but now I wonder will each time get worse and worse?

    I just called the doc's office and asked them to call me in something stronger for nausea, I was like that all day yesterday, and I've been taking 25 mg of phenergan every 4 hours. I am drinking water and eating crackers, because it really is making my belly severely upset. I have started having the side affects of sensitivity to cold stuff, I took a sip of a cold drink yesterday and it felt like pins and needles all in my mouth, I also feel cold sometimes, but actually feel like I am buring up or vice versa. Ah, and yes, the wonderful headaches that turn into migraines. Typing this today will be my most strenuous exercise today, or going to pick up my script maybe, if I can tolerate it because I am just not up for the game coach if you know what I mean, which I am sure you all to well do.

    Thanks again for listening everyone, you guys are great!

     
    Old 06-06-2006, 08:02 AM   #11
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Good luck Christy, you are in my thoughts and prayers daily.

     
    Old 06-06-2006, 12:32 PM   #12
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Christy:
    Remember...everyone is different. When I spoke of my experiences with chemo last night, for some reason I put my second treatment... not the first before the initial surgery. For that, I had Oxaliplatin, 5FU, and Leucovorin. I went into that one numb too. Didn't know what to expect. The continuous 5FU was allright... I got used to the whirring and clicking of the pump. I tried to picture the cancer cells dying in my mind. Personal opinion is that visualization can be a very strong thing. Anyway, I received the oxali in the fall and had to wear a scarf right after because the first time I walked outside, my throat started seizing up. No colds or hots for me. Also things tasted very metallic. The 5FU caused severe sores in my mouth, to the point where they were so painful, I had to go on morphine. Also the headaches were bad. I found if I came home and went straight to bed for a few hours, I would wake feeling a little better. I did make it through though. And I was receiving radiation at the same time.

    I know you can do this. Don't listen to my post, or remember your mom's experience to it. Try to separate that out, and just focus on it killing those bad Cancer cells. One thing you discover with having cancer I think is how strong you can be. You accomplish treatments you never dreamed you could. It's in the mind, and I KNOW YOU CAN DO IT. --Just get some stronger anti-nausea meds!

    Be tough,
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    Old 06-06-2006, 02:49 PM   #13
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    Christy, I thought I would respond, I haven't been on the boards in a while, but I am kind of a Type A personality and decided that I would work through Chemo. A little history I just turned 31, I was August 05, had hemicolectomy Aug 26th and was off work for 5 weeks. I went back to work full time, and worked all the way through my chemo treatments, I was stage II and had the 6 months of chemo like you every other week 5 FU, Leucovorin, and Oxaliplatin, I went on monday for 4-5 hours had the 5 FU pump and then went back the second day for 2 hrs and again home with the pump, they sent me with all the supplies and I flushed and disconnected my port by myself every time to avoid having to be around for a third day. I also had someone else give me my Neulasta shots on the third day.

    I worked the entire time I was on Chemo, I took a week off (from chemo around christmas and one other week during the 6 month process.) I got Kytril the first day as pre med for nausea IV and IV dexamethasone the second day, I also took Zofran and Dexamethasone for nausea a few days after chemo. Phenegran didn't work for me because it made me too tired to work. I guess I am probably an exception to the rule, I did get some nausea, and diarrhea but it was manageable, As for work, I work as a physical therapist and actually my job involves travel throughout 5 different states, so me personally I would have chemo monday and tuesday, and would drive to my destination Tuesday night, Then I worked 10 days straight until the next chemo, would come home for the weekend and treatment and do it all over again, Basically for the first 4 days after chemo, I wouldn't do anything but work, come home and sleep. I will say I did start to have some of the side effects of Oxaliplatin after I stopped taking it (numbness and tingling in hands and feet). But it is true everyone is different, and you have to do what is best for you and what you feel your body can handle. Good Luck

     
    Old 06-08-2006, 03:27 PM   #14
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    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    You guys were totally right, chemo drains you so...it's Thursday, I got the pump disconnected yesterday and I still don't feel well. I feel nauseated and have a little motion sickness for some reason. They gave me some anti-nausea meds but it doesnt help much. They called me back to the office today because my glucose, sodium, calcium, etc., was low from the samples they took before they started me on chemo.
    My partner wants me to contiue with chemo, but I don't know if I will or not. I don't like this eternal feeling of being sick, I swear I need some go-go juice or something. THey gave me a B12 shot and that helped a little, but I am still down for the count today, I cancelled my appt with my geneticist because I didn't feel up for the two hour car ride.
    hope all is well with everyone else.

     
    Old 06-08-2006, 07:42 PM   #15
    Phil in Az
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    Phil in Az HB User
    Re: Starting Chemo on Monday-Reason starting back to work 6/16 & Insurance ?s

    sorry to hear that you're having such a rough go of it christy.

    i'm pretty much out of it until monday/tuesday (get my treatments on thurs/fri) Usually by wednesday i feel fine and and am overdoing it like i shouldn't be. (house stuff, yard stuff etc - type A personality also)

    Anyway, it sounds like you're doing what your body is telling you to do and that is important. Talk to your doc about continuting chemo. I think staying the course is the right thing to do but your onc will know whats best.

    take care, philly

     
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