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Frustrated

CheeseQueen57
CheeseQueen57 Member Posts: 933

Just want to vent!  It’s always something, isn’t it?  Although my cancer is currently in remission due to Megace, I’ve suffered varying amount but constant pain due to the need for a renal stent because of a blockage of my right ureter probably due to radiation damage. My urologist had finally agreed to do a surgery to fix the blockage and it was scheduled for the 24th.  My oncologist and Gyn/onc were all on board. Clearances were done. Then my A1C came back 8.2. Last 3 month period was 8.1. I was sure it would be better this time. But between the Megace, 20# weight gain, and a year of inactivity due to stent pain this is what it is. 

I begged all my doctors for 3 years to put me on metformin for anti cancer reasons and I was predIabetic. No one would do it. I worked in the diabetes area for years. I know what I’m dealing with. Finally I’ve got a little metformin (1500) but I feel there’s a good chance it’s not going to be enough to hit the blood sugar. So I’m frantically trying to pull all the strings I have to get in to an endocrinologist (mine doesn’t do diabetes) before 3 months. 

Needless to say, because a blood sugar this high can impede healing and radiated tissue already heals poorly my surgery is probably off for now.  I appreciate that my PCP is hyper concientous and really the only one looking out for my total well being  But I’m disappointed that Thursday when my urologist pulls my current stent (which I’ve had since November and had no pain but isn’t working) he’ll have to put a longer one in with probably more pain just before I’ll have a house full of people for Easter.  

I‘m trying to be grateful that I’m cancer free, that I have family to celebrate the risen Christ, and I’m sure I’ll get this under control.  But I was looking forward to taking care of this and moving on to the next treatment issue(of which I have many)  But I praise the Lord that I’m  still alive and sorry for wining.  You all know sometimes you just have to say, “Really?”

Thanks for listening my dear sisters.  I’m sure I’ll get my head straight on this one too  

 

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Comments

  • MAbound
    MAbound Member Posts: 1,156 **
    Catch 22

    You sure are in a Catch 22. You need surgery to hopefully end the constant pain so you can exercise again to control your blood sugars better, but can't have the surgery because your blood sugars are too high! Yikes!

    I know the metformin helps with the cancer, but aren't their other combos with it that they can consider that would control your bs better? My husband has been diabetic for over 20 years and was first started on metformin, but has since had Actos and glyberide added to his regime. They really need to find what controls the bs for you with the Megace so you can have the surgery and then start excercising again to help control the bs. They should be able to keep checking you to adjust things as you go along. It just seems like everyone wants to pussyfoot around with it, doesn't it? 

  • Soup52
    Soup52 Member Posts: 905
    I’m so sorry Cheese:(. Yes,

    I’m so sorry Cheese:(. Yes, it’s great to be cancer free, but our treatments can continue to cause problems. Here’s hoping they will up your metformin. So frustrating!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    edited April 2019 #5
    Cheese, I don't have the

    Cheese, I don't have the right words at the moment, but wanted to chime in and offer support. I hope you can go forward with the surgery to get some "permanent" relief. 

    Take care and come back to vent to all of us whenever it is needed. We are here for you!

    Love and Hugs,

    Cindi

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,927 **
    Dang it.  You have every

    Dang it.  You have every right to be frustrated and I hope you can get it done soon.  Dang it. 

  • Armywife
    Armywife Member Posts: 449
    Oh dear

    Dear Cheese, I'm so sorry for this big speed bump!  You sure have suffered enough with those stents.  Hoping for a better result tomorrow than you can imagine, and for a joyous Easter for you and your full house!

  • Lulu7582
    Lulu7582 Member Posts: 112
    edited April 2019 #8
    Diabetes

    Hi CheeseQueen,

    I can understand your frustration. If it's not one thing it's another. Diabetes was my speciality so reach out if I can help. Metformin helps the fastings but it doesn't take care of the post prandial blood sugar. So my advice to help the post prandial's try to watch the carbs at each meal. Typically most adult females can only handle 45 - 50 gms of carbs at a meal....now this is not to replace your medical doc / endocrinology advice but my personal opionion after working in this area for 20 plus years...... Count carbs and with each meal make sure to have protein and a heart healthy fat and that also can help flatten out the sugars post meal. All the best and Happy Easter! xo

    PS The endo might think about putting you on a GLP-1..... deals with fasting and post prandials and will pull down that A1C!!

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Lulu7582 said:

    Diabetes

    Hi CheeseQueen,

    I can understand your frustration. If it's not one thing it's another. Diabetes was my speciality so reach out if I can help. Metformin helps the fastings but it doesn't take care of the post prandial blood sugar. So my advice to help the post prandial's try to watch the carbs at each meal. Typically most adult females can only handle 45 - 50 gms of carbs at a meal....now this is not to replace your medical doc / endocrinology advice but my personal opionion after working in this area for 20 plus years...... Count carbs and with each meal make sure to have protein and a heart healthy fat and that also can help flatten out the sugars post meal. All the best and Happy Easter! xo

    PS The endo might think about putting you on a GLP-1..... deals with fasting and post prandials and will pull down that A1C!!

    Thanks

    Thanks for the info LuLu. Fact is I’m a dietitian and worked in the pharma industry for 10 years for an insulin company so I know what I should be doing. BUT I DON’T WANT TO!  I’m so angry about this. I’m concerned about a GLP1 cause I have thyroid nodules and my liver enzymes are not what they should be. I just have to accept that this is my reality. I can’t even get in to see an endo until June. 

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    Wasn't it Roseanne

    Wasn't it Roseanne Roseannadanna who would always say, "Well, Jane, it just goes to show you, it's always something — if it ain't one thing, it's another?" I kind of feel that should be the motto of our after-cancer lives.

    My GP did not hesitate to put me on Metformin especially when my port site would not heal even after they removed the port. My fasting BG is still too high - around 170 or 180 but my A1c is normal (5.5) so obviously, my body can handle the carbs I eat all day, but my liver can't handle the fasting. 

    Good luck, my friend! I hope you can get that A1c down and get the surgery you need.

    Love,

    Eldri

  • Tamlen
    Tamlen Member Posts: 323 **
    edited April 2019 #11

    Geez, Cheese, I'm so sorry about the latest complication. You've been through a lot and it must be SO frustrating to feel like the rug was pulled out from under you at the last minute. I hope they're able to get things sorted for you so you have some long-term relief from the stent problem and pain.

  • MAbound
    MAbound Member Posts: 1,156 **
    SF73 said:

    I also have a weird fasting

    I also have a weird fasting blood glucose. Last time I got my HbA1c checked it was 5.1%. But my fasting blood glucose is about 110-114. Fasting longer (skipping breakfast) makes it go even higher. I think I might have the dawn phenomenon. To see if Metformin I used to take after dinner was causing too low BG levels during the night and leading to higher fasting blood glucose levels in the morning I stopped taking Metformin but nothing changed. I should first get a brand new HbA1c measurement and then probably Continue using Metformin. I also was on Megace for over a year. It really feels like I broke my body either with chemo or Megace or by taking Metformin when I didn’t need it or by experimenting with intermittent fasting.

    CheeseQueen I am so sorry that you have to deal with this. You would think we could get a break from normal diseases since we suffered the worst. I really hope your doctor would find a good solution for your stent problem.

    Blood sugar and fasting

    I believe the reason blood sugar increases during fasting is because of a process called gluconeogenesis (sp?). When you fast, the liver breaks down fat for energy and it can raise your blood sugar when you are eating nothing! 

  • SF73
    SF73 Member Posts: 316 **
    I also have a weird fasting

    I also have a weird fasting blood glucose. Last time I got my HbA1c checked it was 5.1%. But my fasting blood glucose is about 110-114. Fasting longer (skipping breakfast) makes it go even higher. I think I might have the dawn phenomenon. To see if Metformin I used to take after dinner was causing too low BG levels during the night and leading to higher fasting blood glucose levels in the morning I stopped taking Metformin but nothing changed. I should first get a brand new HbA1c measurement and then probably Continue using Metformin. I also was on Megace for over a year. It really feels like I broke my body either with chemo or Megace or by taking Metformin when I didn’t need it or by experimenting with intermittent fasting.

    CheeseQueen I am so sorry that you have to deal with this. You would think we could get a break from normal diseases since we suffered the worst. I really hope your doctor would find a good solution for your stent problem.

  • SF73
    SF73 Member Posts: 316 **
    MAbound said:

    Blood sugar and fasting

    I believe the reason blood sugar increases during fasting is because of a process called gluconeogenesis (sp?). When you fast, the liver breaks down fat for energy and it can raise your blood sugar when you are eating nothing! 

    Would it be safe to fast then

    Would it be safe to fast then even if it increases your fasting blood glucose level? 

  • Unknown
    edited April 2019 #15
    Hi Cheese Queen-vent away

    I wish the doctors would listen to their patients and consider their input.  Yes, if you could be without pain from your stent, then you could and would work on the other things.  Fix the first problem, then work on the others?  Whatever the decisions of the wise ones will be, I wish you and your family a blessed Easter.  You and I go back a few years, so I feel like we're sort of old friends.  Hugs Nancy

  • janaes
    janaes Member Posts: 799
    Cheese, i wish you didnt have

    Cheese, i wish you didnt have any pain. What a pain in the but for you. You have been through enough.

  • derMaus
    derMaus Member Posts: 558
    Not Fair

    I'm sure you'll get your head straight, as you say, but damn I wish you could catch a break. This just keeps going on and on and it's not fair. I'm so sorry, Cheese. I wish I had something in my power to ease your stupid kidney situation but, alas, prayers and virtual hugs are all I can offer. All you've been through and you're still standing - you are my hero !!!

  • MAbound
    MAbound Member Posts: 1,156 **
    SF73 said:

    Would it be safe to fast then

    Would it be safe to fast then even if it increases your fasting blood glucose level? 

    Not really

    The point of blood sugar control is to keep blood sugar levels as stable as possible throughout the course of each day. Fasting while taking hypoglycemics increases your risk of hypoglycemia and spikes in blood sugar do damage over time. If you are working on weight loss you have to remember Aesop's fables and ask yourself if you want to be like the tortoise or the hare. If you have a lot to lose, it's really hard to be the tortoise, but it's lifestyle change that you can live with forever that's going to have the most lasting effect. Quick loss diets may work, but usually not for the long term.

  • Lulu7582
    Lulu7582 Member Posts: 112

    Thanks

    Thanks for the info LuLu. Fact is I’m a dietitian and worked in the pharma industry for 10 years for an insulin company so I know what I should be doing. BUT I DON’T WANT TO!  I’m so angry about this. I’m concerned about a GLP1 cause I have thyroid nodules and my liver enzymes are not what they should be. I just have to accept that this is my reality. I can’t even get in to see an endo until June. 

    Haha

    CQ well I am preaching to the choir!!!! LOL! Gosh that is terrible you can't get in to see the endo until June... anyway all the best and like you said you know what you need to do. xoxo

    PS which insulin company. I just spent 5 years working for NovoNordisk! xo

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Lulu7582 said:

    Haha

    CQ well I am preaching to the choir!!!! LOL! Gosh that is terrible you can't get in to see the endo until June... anyway all the best and like you said you know what you need to do. xoxo

    PS which insulin company. I just spent 5 years working for NovoNordisk! xo

    Novo Nordisk

    10 years in home office. 

  • barnyardgal
    barnyardgal Member Posts: 272
    I am so sorry you have to

    I am so sorry you have to deal with all that. Hope your doctors can find a good solution.

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    Cheese,

    Vent, vent, and then vent again. We are here for you to listen to your ventings! Sometimes the best way to get the frustration out is to just let it out. No shame there. 

    xxoo

    Denise 

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

  • Jairoldi
    Jairoldi Member Posts: 221
    edited April 2019 #24

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Oh my!

    What a time you've been having. I'm glad you can be home for Easter. 

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    edited April 2019 #25

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    CQ

    I am so sorry that you have to endure this. These procedures that I have never heard of, but of course, someone needs them. I just had a nice dinner with my family which will be my Easter as we are moving this weekend, so take as much joy and happiness with being with family on Easter. I am thinking of you and knowing that you can do this and get through this.

    xxoo

    Denise 

  • Lulu7582
    Lulu7582 Member Posts: 112

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Oh my

    So sorry to hear that CQ!! Gosh how awful! Pain is so debilitating! I do hope they managed to get it under control for you. All the best Monday. Will say a prayer that things go smoothly and for minimal pain. Glad you can at least be home with the family. Delegate all the work to them ok. xoxo

  • MAbound
    MAbound Member Posts: 1,156 **

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Trooper

    Trust you to see the bright side in all of this! I really want this to finally get better for you...I don't think I can take it anymore, either! 

  • Armywife
    Armywife Member Posts: 449
    edited April 2019 #28

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Oh, Cheese!

    Can't tell you how sorry I am to read the original post and this update.  Thankful you got some pain relief, but dang, the rest of it is a nightmare!  Sending best wishes for a joyous Easter and better results onward.  Praying for you.

  • Kaleena
    Kaleena Member Posts: 2,059
    Oh my

    hello Cheese

    sorry you are going through this.  I too developed hydroureternephrosis of my left side.  I had ureter stent put in which needed to be replaced e wry three months.  I did this for over a year.  However I started not to feel good and my urologist did a ureter reimplantment.  I had a mass near the bladder from the brachytherapy.  I hope you are able to get the help you need

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    edited April 2019 #30
    Update

    So here is my sorted story!  I went in for my stent exchange and the doctor couldn’t get it out!  It had migrated up above the blockage and looped into a knot. He said he’d never seen anything like it. So after trying about 8 times, everything he knew, he had to leave it in. I woke up to the worst pain I’ve ever had in my life probably due to him manipulating the stent and worsening swelling of the kidney. The had to hospitalize me overnight for pain management. By the next day I was a little better and they couldn’t do surgery because I wasn’t off me Eliquis long enough, it was Good Friday and the sent me home. I had a nice Easter with my family then the pain started again. 

    One Percacet hit it but is often the case, the 2nd one didn’t have the same effect. I was scheduled to be in Hackensack (A 1.5 hour drive) at 7:15 am for surgery prep. When I met the interventional radiologist he seemed to have no idea the potential severity of the stent situation and the knot ( don’t they talk to each other or read the notes?). Unfortunately my world renowned surgeon went on vacation but my husband and I remembered very clearly what he said and he used the word knot!

    He finally came around to our way of thinking (WTF) and realized the situation was much more serious than he anticipated. Now my challenge was the anesthesiologis. I was concerned about laying on my belly for the surgery considering my terrible reflux which I have even and especially when I have not eaten. The wouldn’t give me a general in which they always protect my airway. We compromised on she giving me anti nausea drugs which seemed to work. I was semi awake which didn’t thrill me and I did feel some pain but not terrible. 

    So I went home after 6 hours, stent gone and a nephrostomy in my right kidney. Pain much improved but a bag to empty hanging on my right thigh. I had to fight like hell to get my home health care which I was told had been all arranged. This hospital is great at passing the buck. So I finally got them to arrange it. Nobody told me how to care for this thing despite the fact I have a tube going into my kidney draining into a bag!!!!!   I knew I needed home health to teach me basic life skills. This is ridicules!

    I’ve got until June 5 to get my blood sugar in order for corrective surgery on the ureter. Meanwhile a trip to MI to get my mother’s (who’s in assisted living ) finances in hand. Whew!

    Enough whining!  Onward and upward. Thanks for listening to me. But darlings, pain makes all the difference doesn’t it?  We can tolerate almost anything if it doesn’t involve pain. 

  • zsazsa1
    zsazsa1 Member Posts: 547
    edited April 2019 #31
    Wow.  CQ, you are incredible,

    Wow.  CQ, you are incredible, enduring all this.  And now you're gonna travel to MI to deal with mom's finances?  Hope it's quick and easy.

  • MoeKay
    MoeKay Member Posts: 354 **
    What an Ordeal

    CQ, I'm so sorry to learn about your ordeal, but I'm very happy that your pain is much improved.  You couldn't make this stuff up if you tried!  Rest and take things as slow as you possibly can.  And you're not whining at all, just reporting the facts!!