Mikenh and Surgery

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  • lizard44
    lizard44 Member Posts: 409 Member
    Glue and sutures here

    I'm five weeks post surgery now and am just beginning to feel  normal again.  I thought all my energy had been suctioned out since after every activity I  felt like I had run a marathon. My abdominal  incisions were  closed with glue- which was  nice.  The perineal wound was closed with sutures, which have been dissolving/falling out for a couple of weeks now.  The stitches around the stoma  are also dissolving, thank goodness- they made it hard to clean up around the stoma.

    As far as hospital charges and insurance, I have Medicare with a supplement plan, for which I am most grateful. All the years we paid for private health insurance and  the years we've been paying Medicare  premiums, I thought we'd never recoup our costs since we hardly ever needed to file a claim.  I have made up for that in spades for the last two and a half years since the cancer diagnosis, and that current  $104  monthly Medicare premium looks awfully good. The total amount billed by  providers for  doctor visits,  chemotherapy, radiation, a liver ablation and  the recent abdominoperineal resection surgery have totalled  just over  a million dollars. The amount allowed by Medicare and insurance was  considerably less: around $283,000.00, and my share of that was  just over $20,000. A definite financial  strain, but it could be so much worse.   The hospital chargemaster rates are a mystery to me, as they don't seem to reflect actual healthcare costs and don't seem to be based on market forces but rather seem to be inflated to counter the  reduced costs negotiated by the insurance carriers. Whether or not the uninsured can negotiate to reduce the charges, I don't know, but I certainly hope so, otherwise I don't see how thay could afford to be treated.

    Grace/lizard44

  • Mikenh
    Mikenh Member Posts: 777 Member
    darcher said:

      My incision is glued and my

      My incision is glued and my rectum/colon were reasssmebled using staples.  Seems backwards but that's what they do here.  I don't think they'll be reaching up in there with a pair of pliars to remove them. I guess I'll be setting off airport metal detectors going forward.    

    Saw the surgeon yesterday and he told me to make an appointment with the chemo people so that was done right away and I'll be in their office today.  We'll see what they have to say.  So your cost was about 100k?  I don't know what mine was yet but it was probably similar overall.  The total I've paid for insurance since signing back up in 08 is right around 90~100k but that's for a family of 4 and no subsidy. It's gotten some other use with the little ones needing checkups, shots, and what ever plus the wife's various tests and such she's had done over the last few years. That being the case, my one incident pretty much used all of it and I'm still not done so insurance is in the red with us.

     I think the hospitals here are adopting a policy of not disclosing the whole treatment procedure upfront in order to keep people coming back. I suspect it's mostlly the shock or fear that has people wander off or hide.  The mortality rates are skewed because of those who don't do what they're supposed to probably more so than what the actual treatment failure rate is. Considering I was given kudos for showing up all the time and taking my pills that tells me there are many who don't.  If it's an issue of cost, from what I understand there are a lot of venues for getting what's needed if affordability is a problem. If a person's job is going to interfere, that's about as low as it gets when it comes to putting profit over people.  Can't say I know much about that since I haven't signed the back of a paycheck in a few decades.

     I'm going back to the chemo doctors in a couple hours to see what color of liquid they're going to pump in me. This ought to be fun.

     

    I worked on scheduling an

    I worked on scheduling an oncology appointment and was given openings in three weeks. Accck! That would be like 5.5 weeks from surgery. I do want to get this going sooner but holiday week coming up probably has people squeezing in appointments earlier.

  • Mikenh
    Mikenh Member Posts: 777 Member
    edited November 2017 #104
    From my insurance homepage:

    From my insurance homepage: (all of the details are available too)


    Total Billed $102,823.55

    • Health Plan Discount $33,343.35
    • Health Plan Pays $67,460.20
    • Patient Responsibility $2,020.00
    Total Billed for Michael as of 11/16/2017 The total billed before the surgery was about $60+K so the surgery and hospital stay look like $30+K and I'm sure that a few more charges will trickly through. The Adjuvant chemo will probably run $20K - $30K. We've been paying into healthcare for 40 years and used very little so we're using up some of that now. Of course I wish that I never had cancer - I'd be fine just paying the premiums and never using the insurance.

     

  • lizard44
    lizard44 Member Posts: 409 Member
    edited November 2017 #105
    Mikenh said:

    I worked on scheduling an

    I worked on scheduling an oncology appointment and was given openings in three weeks. Accck! That would be like 5.5 weeks from surgery. I do want to get this going sooner but holiday week coming up probably has people squeezing in appointments earlier.

    Five and a half weeks out

    might be a good thing.   I know you want to get it all moving sooner, but I had a chemo treatment (irinotecan and Erbitux) four weeks post surgery and found that it hit me much, much harder than any of the pre-surgery chemo sessions and recovery took much longer. I was worried that delaying treatment  might have a detrimental effect, but found this article, which indicates that   there is no adverse effect from delaying chemo a  couple or few weeks until the body has had  time to recover:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3767861/

    Grace/lizard44

  • Mikenh
    Mikenh Member Posts: 777 Member
    lizard44 said:

    Five and a half weeks out

    might be a good thing.   I know you want to get it all moving sooner, but I had a chemo treatment (irinotecan and Erbitux) four weeks post surgery and found that it hit me much, much harder than any of the pre-surgery chemo sessions and recovery took much longer. I was worried that delaying treatment  might have a detrimental effect, but found this article, which indicates that   there is no adverse effect from delaying chemo a  couple or few weeks until the body has had  time to recover:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3767861/

    Grace/lizard44

    Thanks. I will take that into

    Thanks. I will take that into consideration. I'm going to call back to make an appointment and also ask if I can get in if there are cancellations, though who would cancel for a cancer appointment? If it's only Xeloda, then I should have a fairly easy time of it. I'm projecting two weeks out, of course. It takes a bit of time after the appointment to get the chemo ordered and delivered and there's probably some blood work to be done before starting. I guess this is my best shot though. My oncologist did talk to the surgeon so he likely already has the plan in his head if he read the pathology report (and that would only take a few minutes).

  • Mikenh
    Mikenh Member Posts: 777 Member
    edited November 2017 #107
    Oncology appointment on

    Oncology appointment on November 30. I'm not happy about the date but it appears that they can spin up chemo pretty quickly. They do not have a waiting list process but said that I could call back next week to check available appointments. I think that Jim has already started as he indicated earlier that he was going to start on November 15 (yesterday). I believe that's one month after his surgery.Maybe Jim can confirm and let us know if the Adjuvant is any harder than the Neo-Adjuvant.

  • Mikenh
    Mikenh Member Posts: 777 Member
    lizard44 said:

    Glue and sutures here

    I'm five weeks post surgery now and am just beginning to feel  normal again.  I thought all my energy had been suctioned out since after every activity I  felt like I had run a marathon. My abdominal  incisions were  closed with glue- which was  nice.  The perineal wound was closed with sutures, which have been dissolving/falling out for a couple of weeks now.  The stitches around the stoma  are also dissolving, thank goodness- they made it hard to clean up around the stoma.

    As far as hospital charges and insurance, I have Medicare with a supplement plan, for which I am most grateful. All the years we paid for private health insurance and  the years we've been paying Medicare  premiums, I thought we'd never recoup our costs since we hardly ever needed to file a claim.  I have made up for that in spades for the last two and a half years since the cancer diagnosis, and that current  $104  monthly Medicare premium looks awfully good. The total amount billed by  providers for  doctor visits,  chemotherapy, radiation, a liver ablation and  the recent abdominoperineal resection surgery have totalled  just over  a million dollars. The amount allowed by Medicare and insurance was  considerably less: around $283,000.00, and my share of that was  just over $20,000. A definite financial  strain, but it could be so much worse.   The hospital chargemaster rates are a mystery to me, as they don't seem to reflect actual healthcare costs and don't seem to be based on market forces but rather seem to be inflated to counter the  reduced costs negotiated by the insurance carriers. Whether or not the uninsured can negotiate to reduce the charges, I don't know, but I certainly hope so, otherwise I don't see how thay could afford to be treated.

    Grace/lizard44

    The retail rates are for

    The retail rates are for those that don't have insurance. If someone can't afford the retail rates but can pay something, then the hospital will likely negotiate. I had to do that with one of my mother's bills (she dropped Part B - doctor's office visits) and they came out to a huge amount which I negotiated down just by saying that I'd pay the bill. A discount off retail is better than nothing - appears to be their perspective. There are lots of foreigners, apparently with deep pockets, that get treated at the two big cancer hospitals in Boston and they likely pay the retail rates.

     

  • lizard44
    lizard44 Member Posts: 409 Member
    edited November 2017 #109
    Mikenh said:

    Oncology appointment on

    Oncology appointment on November 30. I'm not happy about the date but it appears that they can spin up chemo pretty quickly. They do not have a waiting list process but said that I could call back next week to check available appointments. I think that Jim has already started as he indicated earlier that he was going to start on November 15 (yesterday). I believe that's one month after his surgery.Maybe Jim can confirm and let us know if the Adjuvant is any harder than the Neo-Adjuvant.

    Be interesting to see how Jim's chemo went.

    He and I had surgery the same day, I think, Oct.10, so  he's  a few days past five weeks post-op. We had different surgeries, I think he had a LAR rather than APR, but I wonder if he notices any difference between the adjuvant and neo adjuvant and if the extra week off from chemo was an advantage.

    Grace/lizard44

  • darcher
    darcher Member Posts: 304 Member
    I wouldn't be so quick to get

    I wouldn't be so quick to get my butt chemo kicked, lol.  Met the chemo people today and got told I've got a bunch of that coming end of December and it's going to be heavier doses than what I was taking pre-surgery.  Although it's the same stuff, Xeloda, it's stilll going to take its toll and for a much longer time. They're saying 4~6 months versus the 5 weeks before.  Mine got downgraded from stage 3 to 2 only because technically no lymph nodes in the pathology showed signs of invasion.  

     The oncologist doesn't have a lot of faith in that considering there was a good amount chemo and radiation prior to surgery which could have killed off any cancer cells in there. He said it's very rare to have a tumour like that and there not be any lymph node involvment.  In other words, he's treating this as if it's still a full blown stage 3.  I won't argue. Makes sense that it's possible that the lymph nodes will be blank but that doesn't mean cancer hasn't already used that road and made the trip elsewhere, in this case primarily the liver.

    I'm kind of glad the cancer team isn't a bunch of yes men if one says this they don't always all agree. I'd rather take the cautionary approach to things.  

  • airborne72
    airborne72 Member Posts: 303 Member
    edited November 2017 #111
    lizard44 said:

    Be interesting to see how Jim's chemo went.

    He and I had surgery the same day, I think, Oct.10, so  he's  a few days past five weeks post-op. We had different surgeries, I think he had a LAR rather than APR, but I wonder if he notices any difference between the adjuvant and neo adjuvant and if the extra week off from chemo was an advantage.

    Grace/lizard44

    Good Memory

    You guys have good memories...

    A quick answer: my LAR was conducted 10 October.  I was discharged on 13 October.  Met with my surgeon on 27 October for follow-up and he said it was OK to establish coordination with oncologist.  He also wanted to see me again in another two weeks.

    On 1 November I met with my oncologist to discuss adjuvant chemo treatment.  He recommended FOLFOX6 with 12 two-week sessions.  Each session includes the first two days of infusion followed by 12 days of recovery.  I told him that I had researched this treatment regimen thoroughly and that the hand/foot sensitivity issues typically induced by this treatment present a great concern to my quality of life.  Accordingly, I reserved the right to cancel the treatment whenever I feel as if it is causing too much stress to my hands, and for sure to limit the number of sessions to no more than six.  He agreed so that is my treatment plan.

    Yesterday, 15 November, was the first day of my first session.  It lasted almost four hours.  After accessing my port, they filled me up with steriods and some other anti-nausea meds; one of which was an injection in my gut so Mike add another one to your talley.  That took almost one hour.  Then they filled me up with the "good stuff" - Oxaliptatin and Leucovorin, which took another two+ hours.  As I was leaving they handed me prescriptions for lots of protection from lots of things that I don't remember.  My daughter (RN) was with me throughout and she was a blessing as this was obviously a stressful situation for me, but it was also information overload.  Between the two of us we were able to "get it" but I wonder how many others do not.

    When I left the infusion session I was equipped with a fanny pack portable pump and a bag of 5Fu to be carried by me for the next 44 hours when I am scheduled to return to the clinic.  That will be tomorrow afternoon at 1:15.  During that session they will simply disconnect my pump and clean it before closing it for its next access.  I will then have 12 glorious days of not carrying around the pump.

    Now, how do I feel?  The cold sensitivity set in with me immediately.  My fingers and mouth/throat were sensitive to cold beverages as has been described by so many others on this forum.  This morning I was pulling some weeds out of some of the potted plants on our deck and my fingers began to ache/burn so much that I had to quit.  Weird.

    My sleep cycle is totally upside down thanks to the steroids.  Last night it was 3 am before I could get to sleep, only to arise at 7 am to service my ileostomy.  This could be a catch 22 however.  When the steroids wear off I could then be subjected to more of the negative effects from the chemo.  I will soon see.

    I can already feel a reduction in/suppression of my appetite, even while taking Miranol to increase my appetite.  I have not had any nausea, some hiccups, but no nausea.

    And in the middle of all of this one must continue to adjust to an ileostomy.  Multi-tasking every moment of every day.

    I'll provide another summary report on Sunday - a few days after my pump and 5Fu infusion will have been disconnected.  I would guess that if I were to develop more symptoms they should manifest themselves by then, but what do I know?  This is my first ride.

    Jim

  • airborne72
    airborne72 Member Posts: 303 Member
    darcher said:

    I wouldn't be so quick to get

    I wouldn't be so quick to get my butt chemo kicked, lol.  Met the chemo people today and got told I've got a bunch of that coming end of December and it's going to be heavier doses than what I was taking pre-surgery.  Although it's the same stuff, Xeloda, it's stilll going to take its toll and for a much longer time. They're saying 4~6 months versus the 5 weeks before.  Mine got downgraded from stage 3 to 2 only because technically no lymph nodes in the pathology showed signs of invasion.  

     The oncologist doesn't have a lot of faith in that considering there was a good amount chemo and radiation prior to surgery which could have killed off any cancer cells in there. He said it's very rare to have a tumour like that and there not be any lymph node involvment.  In other words, he's treating this as if it's still a full blown stage 3.  I won't argue. Makes sense that it's possible that the lymph nodes will be blank but that doesn't mean cancer hasn't already used that road and made the trip elsewhere, in this case primarily the liver.

    I'm kind of glad the cancer team isn't a bunch of yes men if one says this they don't always all agree. I'd rather take the cautionary approach to things.  

    Strong Similarity

    Darcher:

    Verbatim, what you said and what you said that your oncologist said, is my situation.  My oncologist is not a yes man and his logic is what convinced me to subject myself to the adjuvant chemo.  It only takes one cell.

    It is a tough decision but you've got to think long term.  That term is defined by your place in life right now.  I am 66.  If I were 56 I would approach this differently.  Even more so if I were 46.  Included in your place of life is your state of health.  Comorbidity plays a significant role in decision making.  Consequently, it is nearly impossible to lump patients together and say that you fit here and you fit there.

    Jim

  • Mikenh
    Mikenh Member Posts: 777 Member
    edited November 2017 #113

    Good Memory

    You guys have good memories...

    A quick answer: my LAR was conducted 10 October.  I was discharged on 13 October.  Met with my surgeon on 27 October for follow-up and he said it was OK to establish coordination with oncologist.  He also wanted to see me again in another two weeks.

    On 1 November I met with my oncologist to discuss adjuvant chemo treatment.  He recommended FOLFOX6 with 12 two-week sessions.  Each session includes the first two days of infusion followed by 12 days of recovery.  I told him that I had researched this treatment regimen thoroughly and that the hand/foot sensitivity issues typically induced by this treatment present a great concern to my quality of life.  Accordingly, I reserved the right to cancel the treatment whenever I feel as if it is causing too much stress to my hands, and for sure to limit the number of sessions to no more than six.  He agreed so that is my treatment plan.

    Yesterday, 15 November, was the first day of my first session.  It lasted almost four hours.  After accessing my port, they filled me up with steriods and some other anti-nausea meds; one of which was an injection in my gut so Mike add another one to your talley.  That took almost one hour.  Then they filled me up with the "good stuff" - Oxaliptatin and Leucovorin, which took another two+ hours.  As I was leaving they handed me prescriptions for lots of protection from lots of things that I don't remember.  My daughter (RN) was with me throughout and she was a blessing as this was obviously a stressful situation for me, but it was also information overload.  Between the two of us we were able to "get it" but I wonder how many others do not.

    When I left the infusion session I was equipped with a fanny pack portable pump and a bag of 5Fu to be carried by me for the next 44 hours when I am scheduled to return to the clinic.  That will be tomorrow afternoon at 1:15.  During that session they will simply disconnect my pump and clean it before closing it for its next access.  I will then have 12 glorious days of not carrying around the pump.

    Now, how do I feel?  The cold sensitivity set in with me immediately.  My fingers and mouth/throat were sensitive to cold beverages as has been described by so many others on this forum.  This morning I was pulling some weeds out of some of the potted plants on our deck and my fingers began to ache/burn so much that I had to quit.  Weird.

    My sleep cycle is totally upside down thanks to the steroids.  Last night it was 3 am before I could get to sleep, only to arise at 7 am to service my ileostomy.  This could be a catch 22 however.  When the steroids wear off I could then be subjected to more of the negative effects from the chemo.  I will soon see.

    I can already feel a reduction in/suppression of my appetite, even while taking Miranol to increase my appetite.  I have not had any nausea, some hiccups, but no nausea.

    And in the middle of all of this one must continue to adjust to an ileostomy.  Multi-tasking every moment of every day.

    I'll provide another summary report on Sunday - a few days after my pump and 5Fu infusion will have been disconnected.  I would guess that if I were to develop more symptoms they should manifest themselves by then, but what do I know?  This is my first ride.

    Jim

    Thanks for the details. This

    Thanks for the details. This is the most detailed description of the process that I've seen so far. BTW, I'm generally changing the bag every four hours and that means waking up twice at night. It's not the best but it gives me peace of mind that it won't leak from getting filled up. I may get over that at some point. If I put the filter tape on before showers, then it shouldn't be a problem. I'm on day 5 of the current bag and it isn't filling up with gas like the one that leaked. Still waiting for the first order of supplies. I returned the Colostomy bags yesterday but they won't get them until Monday and I have the feeling that they don't send the new ones until they get the return. I'm going to call them today to verify that and give them the tracking number.

    I hope things go smoothly for you but I understand the complications of the Ileostomy + pump.

  • Mikenh
    Mikenh Member Posts: 777 Member
    darcher said:

    I wouldn't be so quick to get

    I wouldn't be so quick to get my butt chemo kicked, lol.  Met the chemo people today and got told I've got a bunch of that coming end of December and it's going to be heavier doses than what I was taking pre-surgery.  Although it's the same stuff, Xeloda, it's stilll going to take its toll and for a much longer time. They're saying 4~6 months versus the 5 weeks before.  Mine got downgraded from stage 3 to 2 only because technically no lymph nodes in the pathology showed signs of invasion.  

     The oncologist doesn't have a lot of faith in that considering there was a good amount chemo and radiation prior to surgery which could have killed off any cancer cells in there. He said it's very rare to have a tumour like that and there not be any lymph node involvment.  In other words, he's treating this as if it's still a full blown stage 3.  I won't argue. Makes sense that it's possible that the lymph nodes will be blank but that doesn't mean cancer hasn't already used that road and made the trip elsewhere, in this case primarily the liver.

    I'm kind of glad the cancer team isn't a bunch of yes men if one says this they don't always all agree. I'd rather take the cautionary approach to things.  

    My surgeon was similar to

    My surgeon was similar to yours but she said that she's not an oncologist so she would defer to one. If my DFCI oncologist says the same thing as yours, then I guess that this is the norm. I think that it would be easier to go with Xeloda-only, even at higher doses, because it's something that I know and I know what the effects are on me while I don't know what the other stuff does. At any rate, I will likely take the recommendation. I only wish I knew earlier so that I could prepare mentally. So it looks like you're starting chemo about 7 weeks after surgery. I was worried that I won't be starting until 5 weeks after surgery - I guess that maybe I shouldn't worry as much.

    BTW, there's a Phase I trial of a new Immunotherapy Drug that is supposed to work on 95% of CRC. It appears that an antigen on the cell surface is common to 95% of CRCs so that tumor cells can be identified and targeted by the body's own immune system. If this thing works, then it could eliminate the need for chemo, radiation and surgery. MSI-High can be targeted because CRC cancer cells can be targeted at the cell surface. KRAS-Mutant is inside the cell so it can't be directly targeted. This new approach is potentially quite promising. If it works. It's obviously too late for us now but, if it does work, could be used if any of us has a recurrence.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4288761/

  • lizard44
    lizard44 Member Posts: 409 Member

    Good Memory

    You guys have good memories...

    A quick answer: my LAR was conducted 10 October.  I was discharged on 13 October.  Met with my surgeon on 27 October for follow-up and he said it was OK to establish coordination with oncologist.  He also wanted to see me again in another two weeks.

    On 1 November I met with my oncologist to discuss adjuvant chemo treatment.  He recommended FOLFOX6 with 12 two-week sessions.  Each session includes the first two days of infusion followed by 12 days of recovery.  I told him that I had researched this treatment regimen thoroughly and that the hand/foot sensitivity issues typically induced by this treatment present a great concern to my quality of life.  Accordingly, I reserved the right to cancel the treatment whenever I feel as if it is causing too much stress to my hands, and for sure to limit the number of sessions to no more than six.  He agreed so that is my treatment plan.

    Yesterday, 15 November, was the first day of my first session.  It lasted almost four hours.  After accessing my port, they filled me up with steriods and some other anti-nausea meds; one of which was an injection in my gut so Mike add another one to your talley.  That took almost one hour.  Then they filled me up with the "good stuff" - Oxaliptatin and Leucovorin, which took another two+ hours.  As I was leaving they handed me prescriptions for lots of protection from lots of things that I don't remember.  My daughter (RN) was with me throughout and she was a blessing as this was obviously a stressful situation for me, but it was also information overload.  Between the two of us we were able to "get it" but I wonder how many others do not.

    When I left the infusion session I was equipped with a fanny pack portable pump and a bag of 5Fu to be carried by me for the next 44 hours when I am scheduled to return to the clinic.  That will be tomorrow afternoon at 1:15.  During that session they will simply disconnect my pump and clean it before closing it for its next access.  I will then have 12 glorious days of not carrying around the pump.

    Now, how do I feel?  The cold sensitivity set in with me immediately.  My fingers and mouth/throat were sensitive to cold beverages as has been described by so many others on this forum.  This morning I was pulling some weeds out of some of the potted plants on our deck and my fingers began to ache/burn so much that I had to quit.  Weird.

    My sleep cycle is totally upside down thanks to the steroids.  Last night it was 3 am before I could get to sleep, only to arise at 7 am to service my ileostomy.  This could be a catch 22 however.  When the steroids wear off I could then be subjected to more of the negative effects from the chemo.  I will soon see.

    I can already feel a reduction in/suppression of my appetite, even while taking Miranol to increase my appetite.  I have not had any nausea, some hiccups, but no nausea.

    And in the middle of all of this one must continue to adjust to an ileostomy.  Multi-tasking every moment of every day.

    I'll provide another summary report on Sunday - a few days after my pump and 5Fu infusion will have been disconnected.  I would guess that if I were to develop more symptoms they should manifest themselves by then, but what do I know?  This is my first ride.

    Jim

    Chemo treatments and neuropathy

    I have no idea why the formatting is so  strange on this post.

    Jim, your chemo regimen sounds  similar to my neo-adjuvant regimen of Folfox6 plus Avastin. My pre-meds were Palonosetron to prevent nausea and vomiting, dexamethasone sodium phosphate, an anti-inflammatory, anti-nausea and appetite stimulant drug, and fosaprepitant (Emend), also an anti-nausea drug. My infusions took approximately four hours, and I wore the   5FU pump home for, I think 46-48 hours.

     I was given info sheets about all the drugs, including a lengthy one about the oxaliplatin, that advised me to avoid cold temperatures, cold food and drinks (that was hard in an Alabama summer- no  cold lemonade, ice cream or iced tea!) to wear gloves when touching any cold  objects.  I wore socks at all times and gloves a lot of the time, and kept the air conditioner at around 74 or wore a sweater. It did seem to help, as I had minimal  cold sensitivity and  very little neuropathy- I have a slight numbness in  my little toe on one foot, but that's it as far as  any  long-lasting neuropathy. My major problem was fatigue- especially for a couple of days after the pump was unhooked. I also had some joint pain, mainly in my knees, but it was never a major problem and could be partly due to age- I'm  older than you and was 70 when I started chemo.  I did have some weird sensations as if my skin was crawling sometimes, but that didn't last long.

     I did have low white blood cell counts several treatments in, that delayed chemo a week or so in the beginning, then I was started on  filgrastim (Neupogen) shots.  I think I had seventeen shots in all over the course of the eight rounds of chemo.

     I hope your treatments go well and that your side effects are minimal.

    Grace/lizard44

  • Mikenh
    Mikenh Member Posts: 777 Member
    Bag change today (5.5 days)

    Bag change today (5.5 days) and it took 15 minutes and I'm feeling a lot better. I spent about ten minutes doing prep at the kitchen table and added four items to my directions. A while back I posted a question on how you get the barrier paste off your fingers as the stuff stays on your fingers for three days after you touch it. Well, I guess everyone here uses gloves so it was kind of a dumb question. So today I used on glove on my right hand to use it while my left was ungloved to make it easier to do things that require dexterity.

    I also added a note to close the bottom of the bag. Last time I forgot to do it and saw stuff coming out but beat it to the opening. 1 made some improvements to make disposal easier and I used fewer materials this time as well. So I would like to get it down to 10 minutes and I consider that doable with practice. I still don't have my supplies. I shipped the Colostomy products back but they won't arrive until Monday and I have the feeling that they ship out when they receive the return. I have five wafers left which should be good for 25 days for me. I still have not located a local medical-surgical supply store yet but I did spend some time looking. More on Monday.

    So slowly getting to that new normal.

  • Tunadog
    Tunadog Member Posts: 235 Member
    Good deal!

    I have a Colostomy so it's different.

    I always ask my wife if I can use the bathroom for 10 minutes.

    It takes me about 5 minutes to change or empty my bag. Takes practice.

    I'm sure you'll get it together and I hope your supplies come soon.

    I think I have 6 months of supplies which I have accumulated.

    Peace

  • Mikenh
    Mikenh Member Posts: 777 Member
    edited November 2017 #118
    Tunadog said:

    Good deal!

    I have a Colostomy so it's different.

    I always ask my wife if I can use the bathroom for 10 minutes.

    It takes me about 5 minutes to change or empty my bag. Takes practice.

    I'm sure you'll get it together and I hope your supplies come soon.

    I think I have 6 months of supplies which I have accumulated.

    Peace

    The word for that is:

    The word for that is: PREPARED!

  • Mikenh
    Mikenh Member Posts: 777 Member
    edited November 2017 #119
    Just back from the gym.

    Just back from the gym. Walked 1.10 miles with top speed of 3 MPH (a 10% speed improvement over yesterday) and very happy that I can make a little progress on pace. Then I hit the weight machines:

    - Seated Abdominal Crunches, Leg Extensions, Seated Leg Curls, Chest Press, Fly, Delts, Hip Adduction, Rows, Triceps Press, CUrls

    I normally wouldn't use a lot of these machines in the past as I could do them with dumbbells, barbells or a bodyweight fixed system (pullups, dips and roman chairs). But the machines make it easy to do strength workouts without having to lift heavy plates while limiting range of motion. It did feel good. I should do these every day. Bear in mind that the amounts of weight are a lot lower than what I usually do as I haven't found my limits. I am likely not close to any limits with these tests.

  • Mikenh
    Mikenh Member Posts: 777 Member
    I spent an hour at the gym

    I spent an hour at the gym last night with a 1-mile walk at 3.3 MPH which is my fastest since surgery. I walked 5 miles overall yesterday and this would be a nice thing to do daily but it depends on time, opportunity and energy levels. I also spent time doing weights and increased the seated abdominal crunches from 35 to 40 pounds. I didn't do as many weight exercises due to time but it, and not eating much for dinner, set me up for a very good sleep last night. This morning I tried doing Glute Bridges in bed. This is a lower pelvic exercise and I should probably do more of these in preparation for my reversal (which is two months away).

    The Ileostomy stuff should arrive today according to the tracking number that I got from McKesson last night. They haven't processed my return but my tracking number indicates that they recevied it. So I'll call them again this evening to see if they processed it. I returned the rest of the blood thinner last night so I think that I'm caught up on medical supplies for now. I need to start looking at other ostomy products in case there may be something better for me out there. Sometimes I wish that there was a model with a drain tube and stopper so that I could just release it when near a toilet instead of doing the whole bag thing. I'm sure that such designs have been tried. But new materials and manufacturing processes brings out the inventor in me.

     

  • Mikenh
    Mikenh Member Posts: 777 Member
    My Ileostomy supplies arrived

    My Ileostomy supplies arrived! I now have 20 bags and wafers and two tubes of paste in addition to the five that I have left over from the hospital. If I can maintain five days per bag/wafer, then I should have enough supplies until my reversal (should be in two months and one week if nothing goes wrong) - at least that's what the Surgeon asked for. 25 bags should last 125 days. I'm probably going to order another set next month, though, in case the Oncologist's plans keep me on chemo to a different schedule than what the Surgeon is seeing.

    That's one drop in anxiety level