Who is starting chemo in September 2016?
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Misslill - Glad to hear that you are doing well! A few of my numbers are still down, but getting better. Saw the MO yesterday and he said that is normal as it's only 6 weeks out since last chemo, so same goes for you! At least they are headed in the right direction. My hair is JUST starting to grow in and not everywhere (nothing in the front yet), but I can feel the fuzz!! We are on the road to recovery! Did the MO recommend radiation for you?
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Misslil how many days did you stay in hospital before going home?? what kind of surgery did you have?
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I haven't heard yet on radiation but I'm guessing so. Meeting with MO next week, will ask then.
I was able to just do an outpatient surgery. It was a little unusual as I had a full L side mastectomy when I had DCIS in 2008, and the new issue is (was?) in some residual breast tissue under the scarline above the implant. For lack of a better name, they called the procedure yesterday a 'wide excission' (lumpectomy) of what was left in there. My plastic surgeon also replaced the implant since they had to break into the capsule surrounding the old one. They took some lymph nodes, and I hope they scraped out whatever other residual tissue was still in there.
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Hi ladies
Well I thought I was out of the woods with the SE last chemo was Jan 4. I had notice my left index finger nail had been bothering me (has its own heartbeat) throbbing. Look like it's going to come off. Darn it bad enough all fingernails are discolored now im losing one totally. Sucks . Guess I will use bandaids to cover up.
Outside of this nail issue the herceptin only every 3 weeks has been okay only SE runny nose and little fatigue.
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Other than ridging apparently reflecting each of the different TCHP cycles, I hadn't noticed much with my nails. In last couple of weeks, though, I'm seeing that the white nail tip on some fingers is beginning to extend unusually far back into where the nailbed should be. I've just been trimming that extra off so far but if it keeps pushing further back I could partially or totally lose the nails.
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Another thing I'd meant to mention yesterday. I'd been fretting pre-surgery over whether they would have me take off my cap/scarf and be exposed hairless while at the surgery center pre-, during and post-surgery. When they brought me the surgery gown to change into, there were socks with it but no cap. I didn't think about it much at first, but they let me stay with my cap/scarf from home for quite a while. Eventually just before going into the operating room, the surgical nurse brought a surgical cap (shower cap type thing lol) and put it over my own cap. I appreciated that as a way of handling it since I was able to keep my cap from home on throughout the visit to the hospital.
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misslil - I am heading in for surgery Feb 27 and I was wondering will they make me take off my wig. I have never gone out without it. Even at home I wear it, at night I pull it off sometimes but most times keep it on as my head gets so cold. Glad to hear the nurse put the cap over your cap. I know they have seen many bald heads I just didn't want them to see mine.
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Hahlyn, yes, I was happy about that. I suppose the nurses have seen plenty but I didn't need to add mine to the group. And I had a family member with me, was just as happy not to have to go bare in front of the staff and family. Plenty of other stuff to think about before a surgery without being nervy over something like that.
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Hahlyn....I am having nail issues also..i have two fingers where the nail is lifting...I am just waiting for it to fall off:(
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Hahlyn...I started off the surgery with a hat but I woke up without one on...so not sure about the wig but I can't imagine why they would make you take it off.
I had one drain removed today....3 to go. This surgery has really wiped me out! Good luck to everyone...
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Nayda - Good Lord with the nail issue mines is lifting too and it looks dead wth!!' I had a meeting yesterday and kept my hands folded the entire time. I don't wear polish (at least not now) they just look bad. Plus the bottom of my feet are black just awful. Like i have said before I will be glad when this is OVER!
Denny - I will be mortified if I went in with my wig and it s sitting next to me when I wake up from surgery. Glad to hear you're doing ok and got a drain removed.
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The surgery team usually puts a cap or a net over your hair to keep stray hairs from invading the sterile surgical area. I would imagine this might be problematic with a wig.
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anyone having frequent hot flashes? I am praying for my hair to grow back faster so the hats can come off. The hot flashes are frequent and sweaty. Can anyone relate?!?
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I have total hot flashes Dennyj! Totally relate! I'm realizing its what's waking me up at night and so I'm having a hard time getting back to sleep. I met with my MO this week and she'll put me on tamoxifen which will probably continue the hot flashes. she said she can give me medication for it but right now I don't really want to take anything else. So I'll see how bad it gets. Plus I'm sleeping on my back after surgery and I'm a side sleeper. Ugh. LOL
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I have the hot flashes almost every night. During the day it's not as bad. At night I sweat through my nightie. I heard salt lamps help but haven't given a try.
I'll start AI (not tamoxifen) in March after 3 mo on OS... Not sure how that would affect the hot flashes ...
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Hello Ladies
I too have been having flashes.. They didn't start until I started the herceptin only. They have slowed down a bit but I had my 2nd herceptin only treatment yesterday i guess they will be back.
I had my picc line removed due to a blood clot. Hadso anyone had a blood clot due to their device? Whats concerning me is MO isnt treating the clot. I've called emailed and no response. MO is head of oncology at my hospital I trust her im sure she knows what she is doing. Just a little panicked with everything else going on and now a clot just little unnerving. Not to.mention how im going to.continue to.receive thr herceptin with no picc line. I guess maybe a port. Just praying for Gods Mercy and Grace.
Hahlyn
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Hahlyn- I had a blood clot and possibly cellulitis along with it, but was weird as it happened 2 weeks after my last infusion (in the vein). So at first my MO didn't think it was related (but it was right next to where the infusion was). I was like you- you don't have someone that just directs you to what you need to do! I saw her, and she put me on an antibiotic (not knowing it was a clot at the time)- it got even bigger and more painful the next night so I went to the ER. That's where I got an ultrasound. At first they said DVT and admitted me, but the next day they reviewed it and it was a superficial clot and released me. But then I was confused...in pain, no direction. I finally got into my primary care and she switched up the meds and put me on blood thinners and ordered a compression sleeve and it finally started to resolve. It was so friggin painful. If your MO isn't given you any insight try your primary care. I just kept bugging different dr's until someone seemed to take charge.
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ajbclan
I had the ultrasound and it indicated dvt MO has the results and still nothing. I've emailed called and nothing. My arm has some pain at the site of the picc swollen etc..and she is aware of all of this and still silence and she is normally very responsive. Idk im going to try again today and if no response I will go to urgent care.
Thanks for your response.
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Hahlyn - I found that with my MO as well, and she's just great usually. I think it seems to be out of their comfort zone. My PCP had said it may not have been the actual IV, but just the chemo and my bodies reaction to it. I saw my MO this week for a follow up, she now indicates it was probably from that last infusion. So maybe they just don't do this sort of thing. If you don't have an easily accessible primary care, get to the urgent care. DVT is much more important to jump on then mine. You don't want to go into this weekend worrying.....feel free to PM if you want or need to!
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Had my third treatment with Herceptin alone on Thursday, feeling pretty convinced at this point that I'm not getting much in the way of side effects vs. what i was feeling thru my final round of full TCHP in mid-December. Most of the TCHP side effects have faded except neuropathy, and continued severe anemia readings. Interesting that I'm feeling much better despite the continued poor anemia readout, so maybe the heavy shortness of breath, racing heart and etc I was feeling in Nov/Dec were from general debilitation or something else that has gone away since I've been off the TCHP?
Recovering from my surgery last week. Get tired easily, and it's still sore, but I'm feeling more mobility on that side. Got clearance this week to drive a little, nothing too ambitious but it's good not to feel housebound. Will be going into work part-time mid next week.
The pathology came back from my surgery showing clear margins around a small residual area of 1.2mm, which works out to be >90% decrease in size since before I started the TCHP treatments. No lymph node involvement suggested in the sample of 8 LNs that was taken. Not total absence of disease after chemo, but I was reasonably happy with this result as showing a clear response to the chemo, and it probably made it easier for my surgeons to remove what they needed to and get decent margins.
Next step is consultation about radiation. Also my MO started me on Arimedex pills, which I began yesterday. No noticeable effects from that so far, the main thing he warned me about was potential for hot flashes.
Best wishes to everyone working through late stages of chemo and all of the other experiences in this process.
ps - I'd love to say I had some visibly good progress on the hair front two months out from last TCHP cycle, but that continues to be slow...
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Hi Mislil
I just competed my 2nd round of herceptin only. My blood work came back with low red blood count MO says anemia. I also have a blood clot that developed as a result of my picc line which hasn't now been removed. Scheduled for surgery lumpectomy feb 27. Wondering did your MO advise you of anything that can be done regarding the anemia? I wasn't given anything just weekly blood draws.
My blood clot isn't even being treated was advised it should dissolve on its own "should" not too happy with that answer; but Itrust her.
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Hahlyn - I don't have a solution, but I am in the same boat. My MO wasn't worried about my numbers though as they are improving, slowly but improving. His comment was that my last chemo was only 6 weeks ago (at my last appointment). Our bodies are still recovering. I have been reduced from weekly blood draws to draws a couple of days before the Herceptin.
Have you increased your iron intake... I wish I had a suggestion! Maybe someone else will have something. Best of luck!
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Thanks Beachbaby!
I will try increasing iron. I was looking online and saw something about B12 so ive been taking 2500mcg. Hoping for the best.
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My MO has not been very keen on supplements. During my TCHP treatment phase, he said that they could interfere with the chemo effectiveness. He called me after doing a specialized blood workup in January after seeing that the anemia wasn't going away on its own after I was off the TCHP . He was a little more open to mild iron supplements at that point, but encouraged me more to try diet. He prescribed cheeseburgers (seriously lol), raisins, and other things that could add iron. Also more time after TCHP was expected to help.
At that point, I also had a low potassium level which wouldn't have been helping anything. That one at least seems a lot better now.
I'm a little suspicious that I was given another blood transfusion during my surgery last week. The anesthesiologist took a consent form for it after she saw my anemia level, and I looked awfully pink in the face the days right after surgery. If they did, it must have just mitigated blood loss during surgery and not made a dent in the anemia as my anemia level measured this week after surgery was down a half a point from my pre-op tests.
It's still up slightly from the lowest readings that I was running back in December, and I feel a ton better - so hoping with time and eating a more consistent diet it will resolve itself in due course.
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Hello All
Today I went to urgent care not related to my blood clot my side was bothering me for about a week. While in there I mention my blood clot. After i mentioned the blood clot my side pain. Issue was set to the side. Urgent care doctor ran an ekg because my heart rate was high I told her since chemo it always is. She then sent me for another blood draw (i just gave blood yesterday for MO) asked isnt thst good enough No! My poor veins. I get the blood drawn and go back and im told I need hydration.maybe I do but I don't want to get an IV will have to get stuck again! Nobody listens..the nurse comes in i told him to use my right arm cuz they just used left for blood draw he says no as he is ripping the tape off my arm from the blood draw 15 minutes before. He then goes in it hurts but im dealing with it. He then calls in another nurse and something is wrong. He says I have to tske it out its not working. At the point I tell him I don't want hydration im okay I don't feel dehydrated like i did after my TCHP im okay. He tells the doctor and no hydration. Thank you.
As for my blood clot finally got a prescription for lovenoX have to stick my self twice a day for 3 weeks. MO still doesnt believe I need it even though the urgent care doctor said you need mededication to treat the dvt.
This is just a mess my surgey is Monday not sure if I should start the blood thinner, im so stressed. Asked about a port since picc line is gone I was told to ask BS if she can do during lumpectomy. Sweet Jesus I just dont have any more gas left in me im tired of the setbacks its just too much. So.now I have to hope and pray the bs will do port at the same time..otherwise I dont know how im going to continue the herceptin only treatment. I cant get stuck everytime there is NO WAY I can do that.
Those of you that have ports can you give me some insight on the procedure and how it felt after and how your doing now with it.
Thanks Hahlyn
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Good Morning Hahlyn,
You certainly should call the breast surgeon to ask about the blood thinner. I was told not to even take aspirin or ibuprofen before my surgery because of their anticoagulant properties, and it could very well cause your procedure to be cancelled! I'm not sure what surgery your having, but my breast surgeon was the one that put mine in 4 months before performing my mastectomy and I still have it while I continue the herceptin until September. The port is really no big deal and such a relief to have for them to both draw blood samples and infuse the chemo through.
I feel awful that you had to go through that last night! Keep us posted on how you are doing, ok?
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The port surgery procedure only took an hour or so under general anesthesia. It hurt very little afterward, though I did enjoy a big technicolor bruise for some weeks after
I agree, definitely check about the blood thinner and the rest of your questions with your BS so they can plan your surgery with all that in mind. Hope things get worked out with least stress possible for you from here.
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Hahlyn, I'll echo the other ladies on getting specific guidance on the blood thinner before your surgery.
My first port was implanted by surgeon under general anesthesia. The surgery was much easier than my lumpectomies, a shorter procedure with no nausea upon awakening from anesthesia. I was sore for a few weeks. Unfortunately, that port ended up looping and retracting from its original location and ultimately had to be replaced.
The second port was inserted under Conscious Sedation by an Interventional radiologist. Once again I was very sore, but the surgery was even easier because it was at an outpatient facility with easy parking, quick check in and a very short time in recovery. Once I finally got a port that functioned properly, it's far superior to a PICC line or new IV with each treatment. I previously had a PICC line for IV antibiotics, and I hated fussing with it for showers, worrying about one of the dogs catching the line with a toe, not being able to sleep on my preferred right side, etc. Good luck!
Lyn
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Update time. Emily's hair is really starting to grow back in faster, a few of her fingernails are showing signs of lifting, and her neuropathy has improved somewhat. She is 4 weeks into the radiation and is now getting the sunburn effects. She has been using Aquaphor to help counter that. All in all though, she is feeling and looking better with each passing day.
Hahlyn - Emily's port experience has been pretty positive. It was installed under twilight sedation, wasn't hard for her to get used to, and has worked like a champ. They are still using it for her Herceptin infusion (no SEs, yay!) every three weeks. It also makes blood draws less painful. She just puts on a little numbing cream about an hour beforehand and they plug her in.Healing thoughts to all.
Sam
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Thanks docmama, misslil, Vlh and Sam
Yesterday finally got blood thinners but MO still felt I didn't need it but prescribed anyway. I.went to urgent care for pain in my back its a kidney Infection being treated with antibiotics. The pain is fierce...
Today I went in for pre op phone calls were made can we still schedule her she had a clot blood thinner and antibiotic for kidnew infection. Also she wants a port can doc insert port at same time...im just sitting in there in a haze nurse tells me someone will get back to you. I.left out of there saying really is this.happening. the same feeling I had leaving today is the same feeling I had when I got there diagnosis. Honestly I can't even really think about the surgery due to this damn pain.
Just got a call from bs office have an appointment tomorrow for port consult Lord only knows when I will get it
Can i just say I was feeling pretty good for these past few weeks had my 2nd round of herceptin no SE except for runny nose I almost felt half way decent..now I feel like hell both mentally and physically😔
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Hahlyn, I hope the better days will soon outnumber your bad days. Hang in there.
I'm doing pretty well coming off my surgery, s/b back to work near full-time next week. Will need some PS tweaks when things settle out, but for the moment my main hang-up is that I still have one of the surgical drains in place going on three weeks now. Ugh. The levels unfortunately have not fallen to what my PS was looking for. Hoping it comes out next week.
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