Starting chemo July 2014
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Knmtwins- It doesn't really have a taste but it is very chalky and thick. Please remember to only get the 100% L glutamine powder. There are brands mixed with other vitamins so be mindful of that.You are right about the MIO so try juice, water or milk. My Naturepath urged me to just use water. For some reason I haven't been able to do water. Make sure to mix the powder up real well. I've heard of folks putting it in smoothies. Mix it anyway you can just get it down. It will Help you.
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I keep forgetting to tell you, DH came home with a Sodastream last weekend and has been making lemonade for me, so I am increasing my fluids.
Pinkninja, sent you a friend request.
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Magdalene51- Wow, lucky lady! I've seen those sodastreams and always wanted one but wasn't sure if it was a good investment. Do you love it?? Is it worth the investment?0 -
Oh yes, definitely! You can adjust how much carbonation it has, so you can have it really fuzzy or really soft. There are tons of flavors, with and without sugar. I can't do aspartame either, so I'm glad for the lemonade with real sugar. I haven't learned how to make it yet, but DH is doing it for me.
Oh, the root beer is also very good. I see a float in my future.
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I received the black hat and I Love it.. Thank you again so much xoxo
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Hi ladies , sorry for the couple if days of absence . I'm just so tired and on top of that my baby girl is going thorough nite terrors and she doesn't want to sleep 😪 . Once she wakes on the middle of the night (1 to 3:30 ) she just keep fighting to not sleep and guest who stays up with her??? Of course is this mama here.
So I have being reading the posts but to tierd to say anithing .
I'm feeling a little anxious maybe is the lack of sleep getting a hold on me and B T W I'm eating A LOT ! Have put on around 10 pounds.., not good 😭
Jennliza, OMG girl hope you get better soon...
Raindew glad you are back and feeling better.
Mumford the liver exam .. Sucks but you are almost there just one more and you are done ... You can do it!! 😊
Mags you are such a sweetheart thank you for your kind words but I think every one of us have different challenges and we bravely get it done ! 😘
Coyote that's an excellent idea!
Praying for all July girls always hope everyone have a good week!
XO
Andy
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Hi Ladies! JoeysMommy, you look great in that hat!
Mags, I just got a sodastream from kohls and I love it. But the co2 pooped out after making 3 L! I think one can is supposed to make 60L. So I'm taking the can back to kohls to exchange for a full one, I think I might have gotten a dud. But I love being able to carbonate water!
Mumford, love the pic with Wayne G. How cool is that?
JennLiza, sorry to hear you are in hospital. I hope you're starting to feel better!
Thanks for the tip about the L-glutamine. I hear that taxol causes neuropathy too and that is in my next chemo cocktail. Tomorrow night I have my Look good feel better class so looking forward to that and my last round of AC is Wed...then on to the taxol/herceptin. I think I will have to see if we have a yoga group in our area for cancer patients as I have been very stressed out lately. I'm too out of shape for regular yoga, I'd be downward dog face first on the floor!
Sending positive thoughts to all of you and thank you for being such a wonderful support.
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JoeysMommy- you look great in that hat!!0 -
First let me thank you all for all postive vibes/thoughts and encouraging words.
Kmntwins- ha! Yes I just turned 43 and look like sh&$ in that picture. I have my hair because I am cold capping. I've probably lost 10% of my hair so far though these fever have not been good for my hair follicles!
Now as for my condition...honestly no change! I am still getting fevers and the mass/swollen inner/back thigh is still there.
So I told you the theory from the infectios disease doc: port infection which seeded leg infection.
I was supposed to get an ultra sound and ct scan yesterday. So hours of nothing except fevers, my port surgeon showed up to my room@8pm. She was still not convinced it's infected but thought the right thing to do is remove it....which she did and was one of the most excruciating experiences I've had:
She removed my port with a local...said I'll be awake but won't feel anything. She said she would give me novocaine. I told her I get heart palpations from the epinephrine in novocaine. She said she used it when she placed the port...yes but I was put under with the port placement. So she used novocaine and 5 seconds after injection...boom heart beating crazy and hard to breath. Then she switched to lidocaine...and went in. I wasn't numb at all! I felt every cut and pull/tug...it was excruciating!! When she was about to give me stitches I said I need another shot. Apparently the needle was too thin and wasn't getting to my bloodstream. The nurse didn't look for a thicker gauge one when the doc asked the first time but did for this shot and thankfully I didn't feel the stitches.
After the port removal the PA decided to bring me don't to radiology...they say I wasn't in the schedule and that they are only doing ICU...I start crying. The PA wheels me over to the side and talks to them. He manages to get me in...waited and 80 min in the corner...while wait the lidocaine wears off and I am in agonizing pain...taking 4mg dilaudid!
So this morning I wake up with out a fever...Yay! The infectious disease guy comes and my leg looks slightly improved...he spent all or 3 min in my room. Cut to @11...and I feel my body heating up and bam...I have 101.5 temp. At the same time, this Nurse practitioner who I hate...is with yet another person from the Onc team. And she asks me what's going...I said read my chart...I must have told this story 12 times already...definitely 4 of them were to different oncology team members. Oh get this, midnight Monday night...my Oncology hasn't contacted me since wed night. I am highly thinking if firing her...and going with someone else here at Mt. Sinai.
So rest of mon...I was given an echocardiogram...no murmur...no infection of the heart...no ultrasound either... A resident in ortho stopped by to tell me that there is fluid in my legs trapped between my muscles and that my muscles are inflamed...I asked does that mean I have an infection...he said probably. I was told I have cellulitis... That he would treat with IV antibiotics...which I've been on since sat morn and not much has changed!
I just woke up with a fever...only 4 hours after taking Tylenol...so getting a fever through Tylenol...not happy!
I will definitely be here another 2 days...possibly longer. And to makes this even worse, I'm a contract worker....I don't work, I don't get paid.
I am so frustrated that there are no answers.....and I am so over feeling awful every 4-6 hours!!! Tmrw will be day 7 of fevers!!!
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Jennliza...I'm trying to digest your experience. I'm pretty much speechless, except to say that I'm so sorry you're going through this. One day it will be a story to tell. For now, when you're in the middle of it, it must seem like an endless nightmare. Given that you actually have hair, you must be ready to pull it out!
Do you have a diary with you to record who saw you, the outcome of the 'exam' and conversation, etc? I wonder if that's a good idea for all of us if we have to go to the hospital. There are so many interns, residents, nurses, NP's, doctors (on many different services). Each has their own take and, as you've noted, translation and dissemination of information is not their strong suit.
Please try to remain positive and know that we are all here for you, albeit virtually, when you need to vent, bitch, have a hug...whatever.
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Oh Jennliza, I cannot even imagine how horrible this is for you! Mumford has a good suggestion about keeping track of all the goings on, but as exhausted as you are from all this and the fever, that might just be one more thing to add. I wonder if Mt Sinai has such a thing as a patient advocate or ombudsman? And surely you are right to fire that negligent onco! Just want you to know I sent up extra prayers for you today.
Mommymel, so glad you checked in. I hate that you're so tired and with a fussy baby to boot. Do you know, as horrible as it might sound to us today, my mom would give us a drop of brandy when we had nightmares and such. Of course, she was dealing with six of us, in a little house, by herself (dad was at sea) in the 50's. But none of us became alcoholics, and we didn't turn out too badly. My mom was a practical woman.
JoeysMommy, may I just say, you are so beautiful, and the hat is very becoming on you.
Maidentired, definitely take it back! DH has made lots & lots of drinks from ours & no sign of pooping out. I'm loving the lemonade, tastes so fresh and just a bit of bite to it. I'm wondering if my brain is adjusting to the change in my taste buds, as this morning I decided to try a cup of coffee and it tasted ok. I know they're not back to normal, but that sensation of having burned my tongue on a hot drink seems to have abated somewhat.
Sending up massive prayers for all of you, you are so precious to me.
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hi everyone, I am still here just not doing great at this point. I think it is the big D I think we are on 29 days straight and the last three I think I am just to down and out to handle it with gentleness. I am furious, that my doctor ( please tell me what MO means) does nothing, has giving no feed back at all after days of calls and several times I met with her, telling her how bad this is. I have tried and done everything you girls suggested, yet yesterday I think I visited the throne at least 24 times, and it has been like that for more than 4 weeks now. Usually I just say oh well this will pass, but for some reason in the last three days I have not been able to say that, and also for the first time, I just cant eat, so the five or six bites a day from food is not giving me energy enough to do anything so I have not even gotten out of bed . We went away to the beach, which is walked on the beach all of five minutes and laid in bed the other two days, came home yesterday and feel into bed and has not gotten up since.
Well I am thinking of you all, hope those sick are feeling better, and those like puffin mad that they can't see onco I understand your frustration, but I have the opposite, mine sees me, but for what I have no idea. Also I understand the neuropathy, but it is different for me, maybe because I use my hands in a different way, I since surgery can not feel Braille, so I can't read. That is very difficult for me to face, I also use my hands to see, like where the door knob is, the light switch, and walking with my dog, the pressure or the slight twist of fingers tells my dog where to go without verbal commands so I look like I'm standing I. He street talking to myself, but without full feeling it is all gone and when I think lights are on there not, or when I think I am telling dog to slow down she speeds up, or when I try to cut vegetables. I cut thru my thumb.
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Joeysmom,
You are welcome! Looks great on you!
Shirley
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Giles, it's imperative that you press your doc (MO is medical oncologist) to prescribe lomotil for your diarrhea. You are probably severely dehydrated by it by now. There's no excuse for a doctor to ignore this. With your reliance on touch, it might be helpful to get a prescription for neuropathy medication such as gabapentin. That's what is used for diabetic neuropathy. Lyrica is also good, but more expensive because there is no generic. Both have a side effect of weight gain. But in my opinion, going through chemo is not a time to be concerned with your weight! There are more important things at stake, and the most important is getting through it intact.
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Coyote - kudos to hubby!
Mumford - this is just another bump in your road to getting better. My liver numbers were up, and now they're back down. I'm sure it's just a normal part of chemo that they're so high, that's what my onc said. If there's a delay, you'll deal with it and take the chemo the next time. And this too shall pass! You can do it! Love the photo with Gretsky! We're not a huge hockey area here in Florida, but any sports fan would know who he is.
Mags - you made me cry with the post about you're not the hero. I'm 43 and have kids and I don't feel like I'm the hero either. We're all just doing what we have to do to move forward and hopefully be cancer free. My daughter told me she had to draw a picture of her hero on the first day of school, and yep, she drew me in a head scarf. I started crying right there, too. Stupid cancer. It makes me so angry taht this diagnosis has to be part of my kid's childhood. That they couldn't have a "normal" childhood. I'm trying to keep everything together as usual for them... Thanks for posting that - tears running again.
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Lady1234, as far as I know dose dense is the same amount of chemo but in 2 wk separations instead of the 3 wk so I just finish earlier and have less time to recover. For the taxol, I'm not sure which is considered dose dense, every wk or every 3 wks, but I'm good with getting it every wk even if it's a pain in the butt.
I made pancakes on Saturday and I want them again. It's like I'm on a major sweet tooth thingie. I just want bad food during 1st week of chemo. I feel tired, nauseous, things taste funny, I'm super edgy, I'm tense.
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walle, ur making me cry. ditto about mags. Every day I get more tired and I see my kids seeing this and I can see they are more wanting to be attached. I don't know if they r worried, but I've been more emotional these days just wondering how they r seeing it through their eyes. We all have our diff challenges whatever our ages, dx, circumstances. 1 day at a time. ...
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hi ladies.
First - JennLiza - just. Wow. Speechless. I mean, whaaaaaat? What on earth is going on over there?? I have zero useful advice (like mumford's idea of tracking if you are up to it) but I can only imagine how frustrating this must be - I know how frustrating I found my own hospital stays and those were relatively coordinated. Baffling that one hand has no clue what the other is doing (altho should be somewhat clear that you are on IV antibiotics, no??). I mean READ THE CHART people....ugh. Feel free to moan here any day. Stupid cancer.
Next - Pink - MRSA appearing as folliculitis? Double ugh. Sometimes I feel like it's the petty indignities we all suffer that get me down...(for me it's the taxotere rash, back with a vengeance - can't sleep for scratching and wake up to bloody bed sheets and holes all over my body. And it scars like a b$@!?, have no clue how to deal with that, but will have to wait till tx is all done to even think about it). REALLY hope you can clear up the spots soon. Ugh. Stupid cancer.
Mumford - I am SO SORRY about your liver numbers. As I am sure you know, all likelihood is that they come down and you will finish to be end of month. But I know the pain of tx delays very well...can imagine this is super multiplied as you are looking forward to your last tx :-( I am thinking of you and hoping you can finish on 18th. Stupid cancer.
Wallegator - oh no. I can imagine just what that drawing looked like...I am struck by how manifest the impact on our loved ones is. I am 39, no kids, but a very loved DH and he is clearly struggling and doesn't quite know what to do. He has been wonderful, but it hurts me to see him hurt and know I am the cause of the pain. So complicated. Stupid cancer.
I seem to have finally brought my fever down today. No one knows what it was. I'm just hoping some infection doesn't rear it's ugly head. Like Mumford, I am just ready to be done...end of the month if nothing else goes wrong...
Big hug to all July sisters
Rain
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I've been off line for 24 hours because of the Great Nevada Flood. Maybe you saw the news about I-15 out of Las Vegas being washed away. Well, that is the exit to get to our house. The same place we were stuck on the freeway when the St George bank robber was caught and stopped us on the freeway for hours after my chemo treatment. This time we were not on the freeway, but my neighbor was. He almost got washed away. Many areas of our valley were flooded with a flash flood. Our electricity was out for 13 hours because the electric plant was flooded. Our house is on a ridge, so we were safe, but my art studio and horse barely escaped. Maybe 300 feet from the flood water. My property is on a slight rise that moves it out of the 100 year flood plain. My alfalfa field does have standing water on it, which might be a good thing. Many friends are dealing with water in the house - more than I know yet. We were some friends' house trying to help them decide what they needed to be doing, when we found out that if we didn't get up the hill we would not get home at all. The river was rising over the highway and roads to our house would be impassible. We were the last one over the bridge, and if we were not in a tall truck, we would not have made it.
The result of all this for me is that I-15 is washed away in so many places between here and St George, where my chemo is scheduled on Thursday that it is likely that chemo will be postponed until next week. Right now, you just can't get there from here.
Things I learned. It is good to be prepared. (I am a preparedness freak.) You just never know what is going to happen tomorrow. I need to get all my emergency supplies together in one place. So far this summer, we had a BIG wild fire at the back of my studio property; a bank robber highway blockage in 110 degree heat; and a flood. All of the above made the national news. STOP!
I'm so sorry that so many of our July gals are having side effect treatment delays. Chemo is nasty stuff and I'm not at all surprised that the delays happen, but it can be discouraging. Delays let your body heal enough to take the next treatment. I quit chemo early last time because of it, but I am determined to complete it this time.
BTW: I mix the L-Glutamine in with some liquid protein drink (not much) and it just disappears into the beverage.
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I totally missed an important page of posts. I've done that a couple of times now.
Jennliza, You are in one of the best hospitals in America. Surely, they can get this thing handled soon. Do you see any improvement at all? Intolerance of pain is cumulative. Sort of like water drip torture. I like the idea of talking to a patient advocate.
Giles, do you have a regular doctor that can intercede on your behalf? or one you can turn to for prescriptions? Last time I went through this, I had what I would call an absent oncologist. I developed a good relationship with a nurse practitioner. They are generally more understanding that doctors.
Pink; you too have had more than your share of difficulties. Thank you for the contact information. I put it in a safe place.
Chemo gets more difficult with every treatment. Be sure to tell your MO (or whoever you see) prior to your infusion about side effects. I know they will pull back on the dose. I don't know if they can cut the dose down and add another treatment to make up for it - which I know runs against all we want to do.
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Jennliza ~ I am soo soo sorry for all that you are going through, but I know you know how much support and compassion you have here from all your girls
) Praying for you and sending good vibes... Thank you all for the compliments on the black hat picture... I love it, it really is the most comfortable head covering I now have
) Thank you again Shirley I appreciate it so much ) I, myself had some down time after my 4th AC treatment first with the big D for a few days but then I got hit with a really bad sinus/headcold which brought on a low grade fever which thankfully never reached over 100.0 ... I went to see my MO yesterday just to be checked to confirm that I do not have any type of infection brewing but being that I do feel better although the running eyes and nose are quite annoying he said I should be ok for my first of 12 weely Taxol treatments tomorrow. I am a little anxious about the taxol as I hear that alot of people are allergic to it. Hoping for no allergic reaction and no side effects
)Happy Thoughts and hugs for all my July Sisters
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For all of us Fighting the Fight ~ We Got This!!! Stay Strong ~ We are in this together ♥
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Anyone have any insight - I have a port (right side of chest) so I am not getting chemo through arm veins and also am using the port for blood draws. Have you ever heard of someone developing a small knot (pea size) in the forearm (right side)? It is only slightly sore and just mildly pink/red. If you were holding out your hand for a handshake, it is located almost on top but slightly inside. I am actually projecting that it may be a blood clot but there is no swelling to the hand or the wrist. There is no mark or red dot as you would expect from an insect bite. I am probably just being paranoid. I would hate to drive an hour and a half to MD Anderson and wait around half a day to be told it's just a lump.0 -
Why oh why am I not a radiologist. I have my CD from my June MRI and my one from today. Who knows - same, smaller, bigger??? Also, they say, even though the cells no longer have cancer if biopsied, they may still show on the MRI... Body hasn't had time to dispose of them yet. I need to refind that research.
Perjetta gals - what is up with the lower GI thing. I thought I was over it, as it is day 13 since last chemo, but NOOOO........ I just took an Imodium.
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Blownaway; I recently watched a Dr. Oz TV segment about ganglion cysts. He has some information about it online and how to determine at home if it could be one of those.0 -
Coyote, that's very true, especially if you are doing a lot of hand work. I had a ganglion cyst years ago when I did conventional graphic arts work (before computers), and my main tool was an exacto knife, all day. A doc said to smash a heavy book on it, but I declined. Oddly enough, as computers took over, it simply disappeared. Mine was on the right (dominant) forearm, just around the inside of the wrist, and it was bigger than a pea – think garbanzo bean or a bit bigger. Don't recall it being red, though that may depend on if it's become irritated. I don't think it was painful either. How about a pic, blownaway?
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I called this morning about my red port incision and the red sores on my head, and they had me come in this afternoon and I got to see my oncologist! Finally. When she came in the room Lew said "Hi Stranger". She said usually she and the PA alternate the appointments, and was very apologetic about not seeing me for 2 months. After listening to how chemo #3 went for me, she's going to decrease my next taxotere dose by 20%, said the decrease will have no effect on the overall effectiveness of the chemo. She had the nurse pluck out the 2 stitches that were working their way out through my port incision, and ordered 10 days of doxicycline for both my head sores and the red incision. And she answered ALL my questions.
Coyote: so relieved to hear you made it home and that your property was spared
Jennliza: hugs and prayers, hoping today has been a better day for you.
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Jennliza -- hope things improve for you soon!
Giles -- hope you find someone who can help you with your SEs; Mags is right -- that much D can't be too good for you.
Coyote -- sorry to hear about the flood -- just another speedbump on the long chemo road, I guess.
JoeysMommy -- let us know how the Taxol goes for you. I start next Wednesday after I get a heart scan.
Blownaway -- I have a ganglion cyst on my left wrist. It is painless and looks exactly like the images you get when you Google "ganglion cyst."
I had a long day at work today, though my afternoon class went better than expected. I am so ready for this heat to be gone! Looking forward to Thursday and no more days in the 90s.
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I just googled ganglian and checked out the pics. It doesnt look like my arm. You can't really see that there is a lump on my arm but it can be felt deep under the skin (thickening under the skin) and the skin is slightly red or inflamed. I called my nurse and she doesnt think its a blood clot so the worry is over for now. Some of us have real problems - please all of you get well soon so that we can continue on our journey together.
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I emailed (blo) brain less onco this morning. I just got a response, fruriating. Oh it's after 4 here.
1) after three emails since chemo last week, three phone calls and her talking to me last Wednesday before chemo she said she had no idea my big d was that bad.
2) last Wednesday she stated I could only take 6 immodiums a day and I was taking two much, now she says oh I meant 8.
3) I can't take limotil since I am allergic to Demerol, don't know why but that is what they say.
4) she scheduled me for infusion therapy tomorrow, I said no way, first I can not get there because I would have to call shuttle and it is to late, second I can't sit on a shuttle bus picking up and dropping off 15 other people for two hours, because I don't feel god, I said I would go into urgent care instead, she was mad, I said well if it is a huge problem, why wait till tomorrow, it has been 29 days of this and you have done nothing why cant I wait a few more hours, or why wait until tomorrow if I can get a ride to urgent care tonight.
5)she tells me I should never have waited this long to tell her, I said, I emailed, called and talked to you last week about this, you acted like it was no big deal, you told me to cut down on meds and over the counter drugs, I followed your instructions, oh sorry you don't give writing instructions since I am blind and you can't be bothered accommodating me, so you will only give verbal instructions, it is a good thing my ex was by my side to agree you said it was no big deal to have diarrhea for 3 weeks, now four.
Well when my dd gets home we may go to urgent care, wonder if the doc there will like my child who is actually a dog, or if this one may be better and not be hallucinating. I am so done, the more I think of the next and last treatment the more I don't won't chemo, I just want to move on to rads and be done with this. I feel my BLO is just out to kill me.
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