Calling all TNs
Comments
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Has anyone had chronic mouth ulcers/cankers since finishing your chemo? I don't think I have gone a day without 2 to 3 on my tounge or in my throat?????
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Bak, I'm so sorry your going thru this!!
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Oh Bak - I'm so sorry you are dealing with this! Hoping for a quick recovery - stay on the Dr's butt, squeaky wheel gets the grease
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Tracie- Chk with your Dr and see if it is okay for you to take L Lysine. It should help with the canker sores and you can get it at any drug or vitamin store. Hope this helps.
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I finally got my first chemo on Monday. After the lung collapse during port placement, I was worried about the port working but it worked great and am glad I got it. I'm feeling funny, shaky, quesy and my face and scalp feel numb. All in all, it isn't as bad as I thought. I am taking Claritin to stave off bone pain from the Neulasta shot yesterday, rinsing my mouth with Biotene and taking nausea meds.
Bak - so sorry about the infection. My only experience with pseudomonas was I had an elderly cat that got pseudomonas in his sinuses and I fought it for many years until he passed of intestinal cancer. Cats have very small sinuses where the bacteria is hard to treat so I had to nebulize him twice a day with antibiotics but never really got rid of it. That makes me think that the bacteria is probably still around my house (I lost him in 2008) and I better be very careful. As for your infection, I think the right antibiotics should take care of it but it might take awhile. If I remember right when I researched it was that Gentamicin is a good antibiotic - what are you taking? Stay on top of it with your docs and keep us posted! Take care.
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Hi All, A friend just forwarded an interesting article about a cancer vaccine. Has anyone heard about this? Looks promising.
http://www.wgrz.com Search Roswell Park Makes Cancer Vaccine
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I was given the option of lumoectomy chemo and rads or mastectomy and chemo..I chose mastectomy for my own piece of mind..I was told the stats were the same, but I felt it was the right decision for me..to be honest, I lost all attachment to the breast once cancer was found..I hated it..have since had a prof on other side as well
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Marial - your post struck a chord with me, even though I had a lumpectomy. I sorta think of my affected breast as "the alien." It looks more or less the same as it did before....but I don't think of it as a breast in the way I used to....like I don't "own" it anymore. Now it's a source of worry, with docs poking and prodding it all the time. But I'm still glad I had the lumpectomy.....which makes no sense, I know.
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I had my first chemo today. We just got home an hour ago, and so far, so good. I'm at a university hospital (Northwestern Memorial in Chicago) and I'm amazed at their operation. Everyone seems super on top of things. While I was laying on the bed in my private room (who knew?), I was visited by an acupuncturist, a nurse practioner, a dietician, and lastly, a "patient navigator." My partner was particularly happy about the navigator - she seems like the go to person when we're not sure where to go to.
I feel a little "off" but I wouldn't call it bad. Hopefully, tomorrow will be as mild. And I hope the same for all of you.
Annie
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Hey Annie..glad your first chemo went well..I remember feeling ok..but a little "off" as well...may your se's be few! Remember to call your onc if you feel anything more than a little "off"..that is what they are there for..I'm sure they gave you a number to call...my onc told me that it is their job to be sure that we get through this with as little se's as possible...use them..we don't have to be strong and just put up with it..we just have to get through it...and you will..
Had my 3 month check today...my breasts are as lumpy and bumpy as always..will they every be freaking normal? besides that everything ok...my onc did say no to metformin..which didn't surprise me...he said that he is not counting it out..just wants to wait until more studies are done..ok..whatever...I was whining..but ...we tn's cant take anything..it sure would be nice for us to have something!! didn't work...oh well..I'll ask my BS when I see him...lol.
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ks-Ihave been going to the bs twice a week to have a seroma drained. The doc does an ultrasound and happened to scan the area of my port and noticed a pocket of fluid near where the port was. He drained the fluid and it looked yucky so he sent it in for a culture, this is how he found the infection. When I was in the hospital when my port was still in they took blood straight from the port and that was not infected, they did this before they flushed it. I am on levofloxin, I think that is it plus flagyl again to prevent c-diff.
My mo called me today telling me I needed to get better so I can start rads, that he didn't want all his work with the chemo to be for nothing! I know he is concerned that I have not started rads but now that has freaked me out! He is kinda funny, he told me he thought that the recepionist at my infectious disease docs office was not nice, but he liked the doctor!
Catwhuspurr-yes, animals can carry it. I have 2 dogs and it could be very well the source of my infection, although it is common in hospitals as well. My chihuahua sleeps under the covers with me, although he was banned from the bedroom for a few weeks after my bmx.
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I'm a respiratory therapist and see Pseuomonas all the time, usually with respiratory patients like those with cystic fibrosis or sometimes those with long-term trach tubes. I've gotten to the point where I recognize the smell (sorry if that was too graphic). We keep patients with Pseudomonas in contact isolation (gown & gloves) when they're in the hospital, but in their day to day lives, they don't. They just take normal precautions. I've never heard the assertion of a mortality rate up to 50%.
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Oh I hope I don't smell funny! I can't smell it!
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Annie, Glad you got your first Chemo done and aren't feeling too bad. Keep yourself hydrated!
I can't believe tomorrow will be 4 months PFC for me. I swear it was just last week I was starting treatment and thought it would never end, I'd never have hair again. Trying my best to get back to normal, but have to find a new "normal".
Bak- Your funny, I'm sure you don't smell.
Has anyone heard from Suze? I hope she's resting up for her cruise.
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Annie - I'm glad your first chemo went well, and you feel OK. It sounds like you're in good hands at Northwestern. May your side effects, if any, be mild! And if not, don't hesitate to call your onc....there's a lot they can do to alleviate them.
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It's the morning after my first chemo treatment, and I'm just back from getting my neulasta shot. I'm definitely feeling different than I did yesterday, just more "off", if that's a reasonable way to put it. low energy and a little wobbly. Very glad to have no appointments today, but not in misery. Rather than halving a traditional full time job, I'm a real estate agent. Sometimes busy, sometimes not. It's harder to plan that way, but easier in terms of dealing with employers. I would not want to be working in an office all day today, that's for sure.
Waiting to see if I get any Neulasta pain. What are people's experience with that?
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Annie,
Some people take Claritin to prevent Neulasta pain- I'm sure someone will let you know their experiences with the Claritin. I never tried it but I did get bone aches, even in my jaws, with Neulasta - I took oxycodone for a few days to help with it.
Wishing you the best for no side effects!!,
Christina
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Bak94 - I laughed when I read about your chihuahua! My 21 year old daughter has a 7 lb long-haired chihuahua who is her baby. She just left Tuesday to study abroad in Italy for 4 months, so guess who has a chihuahua under to the covers too . . . me! She's precious, but I'm hoping I get used to her being right between my DH and I. I don't want to squish her! We skype with my DD so Lilo can see her mommy! Don't know if she can actually "see" her but she definitely recognizes her voice and gets all excited. Anyway, I had a visual when you mentioned about your doggy! Aren't dogs awesome?
Kathy
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Khs, That looks really promising!! I want to follow that vaccine trial.
My BS wanted me to do the mastectomy - I have a lot of faith in him - he is actually an oncology surgeon. He said it was better local control and occasionally it can be hard to after the neoadjuvant chemo where the remaining cancer is - it turned out the remaining cancer was right where it started, but I still feel better in terms of local control. Before I followed his advice, I talked to some of his other patients and found that he doesn't always suggest mastectomy. Having said all this, it still has been very hard psychologically for me to lose the breast. I cannot wait to have reconstruction. I'm getting a little better with it, but I don't like taking a shower or looking at myself naked.
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Annie,
I took a claritin the day off and for 2 days after the neulasta shot as well as 2 aleve a day for the same days. I didn't really have any pain. Sometimes I felt a bit achey, but nothing too bad at all. I never tried to go without it so I can't say it worked for me or maybe I'm just one of the lucky ones that didn't get pain from the shot but I would try it if I were you. I heard it can be brutal.
Take care, you'll start coming out of it and feeling like your old self by Monday I would think.
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Annie - I just had my first A/C treatment on Monday, then the Neulasta shot Tuesday. I started taking Claritin (24 hr Claritin - not the Claritin-D) on Tuesday morning before the shot and am still taking it daily. I had a little back ache yesteday but feel pretty good today. I may go without Claritin tomorrow as I heard the first 3 days was worst. If bone pain comes on again though, I believe the Claritin is working and will take it as needed if I get any bone pain.0
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Annie, I did the neulasta shot, didn't take claritin and never really suffered any pain. I was a little achey, but nothing too uncomfortable. I put it down to the chemo, used a heating pad occasionally. Hope your SEs are mild too.
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christina, all of my doctors suggested mastectomy for me for the same reason, after neoadjuvant it is difficult to see where everything is. I am happy for everyone who gets a lumpectomy, that's what I would have preferred. I am glad we have the option of reconstruction.
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Annie, Glad that your first chemo went so well. I also had a bed the first time so they could monitor me more carefully. Did you have a port put in? That makes things easier. I didn't have a port the first time and it burned my vein. Looked pretty hideous for a few weeks. I had a bad reaction to the Nulasta each time. In fact, for me it was worse than the chemo in some ways. I would wind up in bed for a few days hurting all over. Claritin didn't touch it so the second time I would just take vicodin and that helped the pain considerably although it made me sleep for 3 days. Usually, the first week after chemo was pretty good because of the steroids. I actually had lots of energy after the first two rounds but by rounds 3 and four I felt definitely poisoned. Pretty much became a homebody. My friends organized bringing over meals which was nice for my husband. At least he was fed and watered. Hope this info is not too much of a downer. But it is what it is. At least I didn't have to shave my legs for four months and it does get better. Let everybody help you and bask in their caring. Shed the toxic friends and watch funny movies.
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Annie - I didn't notice any effects from the Neulasta shot, nor did I take Claritin. Hope you are as lucky as I was.
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CatWhispurrer - I am going to be a week behind you in treatment. I get my port on 1/30 and get my first round of A/C on 1/31. Get my nuelasta shot the next day. Let's hope we are the lucky ones with minor SEs. I think I will definitely start on the Clartian and Alleve before the Neulasta - just to hopefully avoid some of the SEs. I had a BMX - so no rads - but will be looking at reconstruction (currently hve T/Es) as soon as possible after chemo; I really want to start this whole chemo schedule as positive and upbeat as possible - some days are good and some days not so good,
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Annie - I guess I was lucky. I didn't have any side effects from the Neulasta shot, and I didn't take Claritin. My side effects from A/C were also pretty manageable. I hope it goes well for you, too.
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Good evening ladies! Hope you all had a good day.
Bak- So sorry you are going through all of this. I'm hoping you heal quickly.
Painting- so happy you got to take a much deserved celebration.
Annie- I hope chemo goes by quickly with few if any SE's. My acupuncturist has helped me with many of the SEs I had. I didn't take anything the first time I had the nueprogen shot and was in horrible pain I thought was caused by the chemo my oncologist pharmacist told me to take 1 clariton and 1 Zantac(heartburn) 1/2 hr before shot and I never had pain from it again except the time I forgot.
Tracie- any mouth sores I had were quickly cleared with oral Fluconazole a yeast infection med. I learned that from my phar. Onc gal too. I've done a lot of chemos too.
I'm believing this Halavan is starting to show signs that it is working. Pain slightly decreased and edema in my hand starting to go down. Skin mets lighting up too! Fingers crossed.
Hope you all have a great evening0 -
I hope none of you having the nuelasta have to have any pain...I had enough for all of you....you can thank me later..lol. I was just getting ready to contact the acupuncturist (found out it was covered by my insurance)...but it was late in my chemo..I think I had just one more shot to go so I didn't do it....I wish I would have known about it earlier or I would have had it done the whole time.
Good to hear from you Laura Jane! It's always good to hear from you...I just smile when I see that you have posted...
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LauraJane - good news. I really hope Halavan is working for you.
Annie - I also took Claritan with the Nuelasta and had no bone pain....hope you have no pain either.
Suze - hope you're getting all rested up and ready for your wonderful Disney Cruise.
Bak - hope your infection clears up soon.
Hi everyone. Wow, when I look above at what I've just written the word "hope" pops out in each line. Maybe that's my word for the day...HOPE. Take care!
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