Unfortunately things are going downhill
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I also agree with zarovka that having a fever can be effective against cancer. So please do not stress about missing the chemo.
Also, it is not unusual for women in our situation to get UTI's, even if there are no symptoms. It's a conundrum, especially inasmuch as untreated UTI's can sometimes cause issues. Some things can be done to help promote health in the urinary tract, such as taking D-Mannose, a nutritional supplement that can be found in cranberries and other fruits. Personally, I think many of us have UTIs of which we are not aware that are contributing to our fatigue.
I'm glad you received the needed medical care, and hope you have a good rest of the week!
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Kandy, if any among us can bounce back...it will be you. You repair your body better than anyone I've seen post. Try not to be too down. You have come back from much worse. ...and we are all sending you our big virtual hugs! XO
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I am also one of those people who hesitates to call. I go back and forth trying to figure out if this is something that will pass, can I fix it on my own? I just hate calling, I'm not sure why except maybe i've have a lot of negative experiences going to the Dr and having them roll their eyes, pat my head and sending me home with no real advice. My husband also brow beats me into it. Today in fact he has already called to ask if I called the Dr. to which I say I WILL, I WILL, but in my head I'm going UGGGGHHHH.....But I will! LOL!
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Thankis to everyone, I really appreciate the advise and support I get from y'all my fever broke last night and I started feeling a little better. Cancer center called this morning and wanted me to come back over there. They wanted to repeat labs, get more fluids and see MO. So we got the labs done and they said my hemoglobin had dropped since Monday. It was already too low then. So I got fluids, they decided I should get blood tomorrow, and hopefully be able to get chemo again on Tuesday. My fever had finally broke last night and they were happy with that. That obviously we were headed in the right direction. Then MO fussed at me for waiting till Monday to call. Said I should have called and I would have been told to go to ER. I said I didn't feel like it was an emergency. He said obviously I didn't understand how quick chemo patients can go septic. And if that happens most of their patients don't make it. And that will be the end. So anyone out there that thinks the same as I do, I warn you that your oncologist is not happy when you don't follow directions enjoy your evening and the moment.
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Oh my! That's a sobering admonishment from your MO! Yikes! Glad your fever broke, you got fluids and will be getting a transfusion. Hope you'll be feeling better soon! Take care of yourself! ((Hugs))
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Kandy, first I want to send positive thoughts your way. I'm not familiar with the fever theory but am sure Z knows what she is talking about. Hold onto that and get yourself back to normal soon.
I've been following the discussion regarding holding off to contact your healthcare team when you don't feel right and I can totally relate. At one point during my adjuvant treatment my MO gave me his home phone number as he knew I was not that keen on ER. I had two blood infections while on CEF and both times I was treated badly in the ER. The problem was, I don't present. I would go with a fever but would look okay so would then get lectured on the cancer centre sending their patients to ER. Never a good experience, particularly when your neutrophils are in the toilet and it's the worst bloody place to be!
For me, there are a number of reasons I still hesitate. First, beyond BC, I have rarely been sick. I don't go to doctors much because I didn't need to go to doctors. In fact, I worked for over 8 years with my current employer with only 2 sick days. (One of them was due to the Norovirus that my stupid dog gave me. Long story...)
I also hate the feeling that a) I'm crazy - imagining symptoms when things don't make sense and b) that somehow everything is related to BC. The second issue causes folks to jump into high gear whenever I have issues. That's a good thing, I know, but I feel guilty jumping the queue when it may not be urgent and may be related to other things. Makes me crazy. Going through this right now with a lung issue leading to both my MO and GP separately ordering urgent CT scans. Not sure what the issue is, I feel a bit crappy but am not incapacitated for heavens sake!
But that is some sage advice from your MO Kandy. We forget sometimes how quickly things can go badly.
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Kandy, I'm glad to hear you are on the road to recovery. I'm pretty sure when they were handing out "luck" I got the same crappy luck as you. Two days after my last chemo on June 27th (Carbo & Gem) I woke up with a bad hacking barking cough. I am lucky in the fact that I have not had any fever, but it's been a full week and I'm not getting better. MY MO has thrown 4 different antibiotics at me....Levequin, Amox-Clav, Z pak, and now doxycycline. She has also had me on 20mg of prednisone and then 30mg of prednisone. Nothing has worked...and she doesn't seem all that concerned. I asked my MO to refer me to a pulmonary Dr. and she got me an appt. for Aug 23!!!! I just wanted to scream at her...Do you know how miserable I am? So I went to see my GP yesterday and first thing out of her mouth was...We need to get you an appt. with a pulmonologist ASAP and get a bronchoscopy! I wanted to jump up and hug her!!! My GP was also questioning why she kept prescribing antibiotics after the first 2 didn't work. She said usually if Levequin doesn't help then it is more than likely not bacterial. Sometimes the different doctors I see and speak with....interventional radiologist, GP, etc.... seem more knowledgeable than my own MO. It may be time for a switch!!
I also can't get my chemo this week due to whatever this is I have!! I have heard the fever theory before...how a fever can kill cancer cells. So I would not worry about missing your chemo. In Germany, they use mistletoe as part of their cancer treatment. If you get a high enough dose of mistletoe, it causes a fever and fever is a good thing in the cancer world.
I admire your spirt and know you will cross this hurdle just fine!!! Praying healing thoughts for you.
Hugs,
Robin
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Robin. I just had an experience with my MO that makes me question whether I want to continue with her also. Constipation issue for 6 weeks where they kept recommending one OTC remedy after another. Nothing was resolving the problem. I went to the ER once and got and very humiliating enema although at this point can I really be humiliated?? LOL!
Kept calling my Onc to say it wasn't resolving. At this point I was dehydrated, couldn't eat a damn thing, and could hardly sit up straight due to the huge hard bloating in my abdomen. I called on the Friday of the 4th weekend, still couldn't get my Onc on the phone but her NP. I told her at this point my stomach was so large I looked six months pregnant, couldn't sit up in a chair straight. I said I think this may be more than a constipation issue. They went back and forth with messages and finally my Onc prescribes yet another laxative.
The weekend was misery but I still managed to make it to the ball game and fireworks on the 4th for my son. I dragged myself into the stadium and sat the rest of the night exhausted. Still no relief the bloating was worse than even even though I had eaten literally nothing for days.
Finally I went to a more local hospital which is actually well rated for cancer treatment and is affiliated with Stanford. The Dr there immediately ordered a CT, found it wasn't a constipation issue at all even though it can feel exactly like that. I had an abdomen full of ascites, which I had a sneaking suspicion of anyway. Not good news of course, but the relief of finally getting a correct diagnosis and having him resolve it was such a huge relief.
He was a prince by the way. If only all doctors had the compassion, brains and comforting bedside manner of him we would all be in a lot better shape! I told him I wish he was an Onc, I would sign on immediately. So to wrap it up I think I need to rethink my current "team". There have been a few things that have shaken my confidence but this one was a capper.
Robin, I am so glad you finally found someone who really listened to you. How can they ignore how absolutely miserable we are sometimes?
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Artist, I know exactly how frustrated you must be!! I'm glad you decided to go to a different hospital and now have solved the mystery. Did they have to drain the ascites? How much liver involvement do you have? I just met with an interventional radiologist about treating my liver because we can't find anything to work on my cancer. He put my case in front of the tumor board and they recommend Y90. He said now is the time to do it, when your liver enzymes are normal. They are trying to get an insurance approval so I can move forward. I am so scared of this procedure bc my MO told me one of her patients had liver failure 12 weeks after the procedure. I googled liver failure and Y90 and it does happen. But I feel like I have no choice. The IR told me if I didn't do and continued to fail therapy, I would have about 4 to 6 months left. One of my liver tumors is the size of a golfball and I have only had liver mets since November. But then again, no therapies have worked since November. This disease is so scary how things can change so drastically. Last May I was almost NED, but had 1 tiny stubborn bone met. Now I have diffuse mets in my liver.
It is so hard to find a oncologist with everything you want and need from them. The oncologists I had before the one I have now, clearly had no compassion. My current MO does have compassion! But my MO is so darn forgetful!! I constantly have to remind her of the things we discussed and what she was supposed to do. She called me last week and told me to text her the next morning all the things we discussed and the things she was supposed to do. She said when she comes in at 830, she already has 7 patients waiting on her and forgets things. My mouth hit the floor!!! She knows I'm on to her for being so forgetful. The funny thing is....I sent the text and laid it all out what she was supposed to do. She was supposed to mail me a couple of prescriptions that she can't call in to the Alabama pharmacy because my insurance is in TN and they required a script in hand. One script was for codeine to relieve my cough. Well I waited and waited and never received them. I sent her a text and let her know I didn't get them and might as well just pick them up on Friday when I go in. I have been suffering with this awful cough and have had no relief. I honestly don't know how she keeps her patients!
I hope you are feeling much better!
Hugs,
Robin
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My Three Muskateers, Kandy, Robin, and Artist, you all keep fighting!
Robin, I've looked into Y90, and I know I will do it when the time comes myself. It can buy you many more months. The important thing is NOT to wait too long. As with many of these Tx's, we have to be healthy sick or they won't be as effective.
Artist, ascites are miserable. You may need to have a drain installed so you can drain them off yourself when it gets to that point. Sigh, that may be my reality, too as my liver becomes more riddled with tumors.
Kandy, are you better today?
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Good evening ladies,
First of all thank you again for the thoughts and prayers from all of you. Today I went and got 2 units of blood. That really made a big difference. This morning I was ready to throw in the towel. It was very difficult for me to even get ready and get over there. I was exhausted. But now that they put gas back in my tank, I think I can continue on for now. This is definitely not a easy road to travel. To all the other ladies that are experiencing hard times right now, an extra special prayer for you. I'm praying for all of you. Enjoy the moment ladies
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God bless you ladies. I am in awe of your individual strengths. I will be sending thoughts and prayers to all. I really hate the road we are all on and I honestly get devastated thinking about everyone it effects. It just kills my soul. Try to get some sound rest and thank god Kandy, you've received some much needed blood. Hugs ~M~
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So glad the transfusions perked you up, Kandy. It's horrible to get to that point where throwing in the towel seems like a viable option. (((Hugs))) and hoping things will be looking up now that you have more energy. By the way, I also recently had an episode of severe dehydration along with an E-coli infection, and I was a bit shocked at how seriously my local onc treated the situation -- very much as yours did. I was never told about sepsis, but reading that now helps me understand his urgency and no-nonsense springing into action. And yes, it's shocking how very sick you can be with just those two things going on.
That's kind of shocking about your onc, Robin, especially when they're all plugged into laptops these days, which I'm assuming she is, so should be making notes. That does not sound like a comfortable situation, especially if you were to have an emergency and needed her to be up-to-speed on your situation and able to act quickly and confidently. Are you thinking of looking for yet another onc?
And, Artist, ohmygosh, from your explanation of events, I would think your onc would have had plenty of time for ascites to cross her mind if she'd been at all focused on you. I know choices may be limited in the mountains, but I find it very hard to excuse her lack of recognizing or even considering ascites in your situation. Thank goodness you went somewhere else! Do you think maybe the doc who treated you might be able to recommend a better onc? I hope so!
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Robin, yes they drained off 4 liters of fluid which was shocking and painful. He said he did not even do all of it because my blood pressure could drop too low. So it sounds like I may have to do it again which I dread. My right side still hurts a lot. He did say my liver function tests were all good though. I have two larger lesions and a few scattered smaller ones according to last scan. I would consider y90 also although that is so freaking scary about liver failure It terrifies me how we fall through the cracks so easily. Can't believe you are still riddled with a racking cough!! I am sure you are feeling so worn out. hope the codeine finally helps. Kandy I am so glad the transfusion helped finally. Take that towel and start cracking it at people! Deanna that is so scary about EColi and dehydration on top of that! Thank you for reminding us about sepsis and it is WAY more common than you would think. yes I see my Onc on Friday and definitely would like a logical explanation on how it did not even cross her mind to check me out. I think the last call because it was on the Friday before the 4th she decided to put me off for one more week so she could enjoy the long holiday. I hope that's not true but I do wonder. After I went through all that hell and she got the report she STILL did not call me herself to see how I was doing. She had a NP do it which just irritated me further....I do plan to search at the new hospital for a new Onc as they have a good reputation for cancer care and are affiliated with Stanford. Deanna I moved down the mountain to a bigger city so hope this brings me more options. Lita yu dear heart you are such a bright sprit warrior. Ten years at least to you with decent QOL! Big virtual hug to you micmel! And all!
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Artist~ sending one right back, thank you very much for that. I needed it. I guess you don't realize how tired you are, until you have to get up. All of this is so exhausting.
Kandy,I hope you're feeling better since your transfusion. I think of you everyday, when I look on my favorite topics.
I pray for us ladies every night. I think of you ladies everyday. Some days this place is the only place I feel understood. Lately, it's most days. Stay strong. We have no choice. ~M~
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Artist, that does sound painful! I'm surprised that I have not had ascites and pray I do not get them. I am happy to hear your liver function is good!
The Radiologist called to set up mapping for next week. I told him I was not ready because I need to think about it some more. Well God must have been sending me that message, because he had already answered a prayer...I just didn't know it yet. Then today I sent my MO a text message to see if my TM's were in. Yes they were and they were 26 points down!!!! This is the first time since November that I have had a reduction in TM's. So the Carbo/Genzar is working!!!! So I am putting off Y90 for now. I was having 2nd thoughts anyway after going through some of the old y90 threads.The Gemzar is rough on the red blood cells. My HMG was 9.2 on Friday. This morning I got up and drove my nephew to the University of North Alabama for a 2 day college orientation. We had only been there for about 30 minutes and were about to board a campus bus when I became weak in the knees and felt like I was going to pass out. I sat down on the grass and still felt dizzy so I just laid back. I decided to call an ambulance because I knew HGB had been low and I was kinda scared. I went to ER and they started fluids and took blood. My HGB was 7.8 and I needed a blood transfusion. The Dr. on staff called my MO and she said I could get blood there or come in today or tomorrow to see her and get transfusion. I opted to go see her because of insurance purposes. My Dad and Brother drove to Florence to pick me up. I am so sad that this happened, because this was supposed to be a special time for me and my Nephew to create memories. And this damn cancer took that away from me too!! My nephew and I are very close and I wanted this so much. He was having so much anxiety about orientation.
Hope everyone is doing well!
Robin
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Oh, Robin! I HATE THIS DISEASE and what it does not only to us, but to everyone around us.
You did the right thing calling an ambulance. It could have been way worse if you didn't.
All of us on chemo need to be aware of blood counts and how dizzy and light-headed we can get. It's no joke.
Prayers going out!
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Robin, I'm so sorry that happened. So glad you called an ambulance. I'm right there with you as far as hemoglobin. My first transfusion only kept my levels up for 3 weeks, then I had to get another one. It sure does make you so weak. Glad that you are okay, though. Best wishes and enjoy the mo
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Lita & Kandy, Thank you! I am dreading this infusion as I have never had one. And I know if I stay on Gemzar there are more in my future.
Kandy, Wow only 3 weeks!! I had no idea. How long do you have to wait to get next chemo after a transfusion? This chemo will do me no good if I have to keep stopping treatment.
Have a good evening everyone.
Robin
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Oh my god Robin. You have already been through SO much. Then finally some good news only to be squashed by that. Sending you a huge virtual hug! Hope that transfusion holds you for a good long time
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Thanks Artist!! I do need a break, but then again....don't we all.
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Robin, I'm not sure how long you have to wait. But my first one, I got blood on a Thursday then had chemo on Tuesday. My schedule is 2 weeks of chemo, then a week off. He likes to give blood on that week off. Do you have a week off. I hope you get a longer time than 3 weeks. Everyonewas surprised that I already needed blood so I don't think that is the norm. I had anxiety to over myfirst one, cause I had never done that before. But it was a piece of cake. They do give Premeds to help prevent you from having a reaction. They give benedryll so that might make you sleepy. The nurse stays with you for the first 15 minutes to make sure you don't react. Each unit takes 2 hours to go in. So if you are getting 2 units you will be there at least 5 hours. Pretty simple, just time consuming. I wish you the best.
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Thanks Kandy! That eases some of my fears, but yikes so long!!! I guess I better eat a good meal before I go so I don't starve.
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My chemo room offers snacks, drinks, and sandwiches. Does yours
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Sending hugs and prayers to Kandy, Artist and Robin tonight. Stay tough through these dips, ladies.
I am in pain from a reason completely UNrelated to cancer, and it has devastated my moral. Fell off my bike, actually. Normally I feel like I am going to beat this, but the pain in my hip and rib and wrist debilitates my spirit. I was weeping today as I watched my children walk together through an adventure park ... feeling like I am already gone watching them from heaven. Goodness gracious. I have to slap myself ... where is this coming from? Pain, fear, medical procedures.
My point is that if the stuff you are going through were totally unrelated to cancer, it could still mess with you mind and your optimism. Keep your chin up and your eye on the horizon ... we're all going to see this through.
Hugs to you guys. Please be sure to have a great Tuesday. The rest will take care of itself.
>Z<
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Oh no Z, I am so sorry you had a fall. I sure hope you didn't break anything. Hugs.
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I just caught up reading this thread. Wow, this is one tough bunch of women, and I'm so glad we all have each other. About calling when you have a fever. One night soon after my last Taxol cycle, I had a fever that passed the magic number, so I followed instructions and called the cancer center. They said I had to come in. Bundled up, made the long drive with DH. It was just the little flu that other family members had had, but I got to spend a good while in a little room getting a blood test from my arm, a blood test from my port, a culture of my nasal secretions, antibiotics, and an antiviral. Sheesh. But, better safe than sorry, right?
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Even though we make RBCs continually, their lifespan at best is 100-120 days. When your bone marrow is affected by chemo and not making like it should, it is hard to keep up the number of rbcs needed by our body and the daily die off can get ahead of the production.So having transfusions could last for awhile until your production is better. Of course, you need to be sure that you are not losing in your stool and that your iron levels are adequate, because you can't make blood without adequate iron stores.
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Beatmon, that is good to know.
My DH wants to know if there's anyway we can UP the production of RBCs. Red meat? Spinach? (I know that's good for iron.)
Thanks.
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Gosh, Robin, what a horrible experience! I'm so sorry that happened to you. Perhaps by now you've already had a transfusion and are hopefully feeling much better. Very scary!
Z, I'm so sorry to hear about your bike accident. I can tell it's shaken you up in more ways than one. Pain makes everything else so much harder. Hoping you heal quickly and will be back to the resilient you we all know and love.
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