IBC lounge: roll call, support and just a good place to hang out
Comments
-
HI folks, I'm back ! I got my anapath and post-op report, future chemo apt, plus antiobiotique treatment for infection above mastectomy scar (plus threat of re-hospitalisation if this infection is not resolved in 48 hours). The report shows that the heavy chemo and radiation treatment was only partially successful (less than 50 percent) but the surgeon got clean margins than goodness (although just barely). I've been feeling pretty horrible due to the infection above the scar, but much happier now, that I've seen the surgeon, talked to the oncologist, gotten treatment, plus new chemo schedule on the horizon. If all goes well I start Halaven again this Friday. I am so very very very very grateful to be in France. May the United States one day have universal health care, I wish so fervently !!.
0 -
Thanks for the update Amarantha. Your medical situation is so complex that I'd be surprised if you don't make it into the medical literature! At least there is some good news with the margins. And complete pathological response to chemo is certainly not always achieved. It wasn't with me. Halaven is an excellent drug and I'm assuming it will mop up your residual cancer. Hang in there, you're an inspiration!
0 -
Sorry to hear about that infection Amarantha. 48 hours isn't much time at all, hope it clears up fast so you don't end up back in the hospital.
0 -
Traveltext and LoriCA, you are right ! 48 hours isn't much time. I really do hope it is just an infection and not a new infiltration of the actual cancer (precisely what the surgeon was afraid of) (he really did not want to do this surgery). And I'd much rather it resolve so I can go on back on Halaven chemo on Oct 19 because the growth of skin mets on the other side of my chest is starting to scare me. But recent PET scan showed no cancer left in my bones or lymph nodes for now, which is just amazing. And I have so many more operas to travel to and review !
This will sound perverse, but I'm kind of looking forward to losing my hair again (3rd time !) so I can wear my pretty wig. Although it has really been nice having hair growing in. It's like an inch long now, and stubbornly sticks straight up. I look exactly like my paternal grandmother. Unfortunately, I pretty much hated her, so I'm not super in love with the look, on the other hand it is kind of cute.
0 -
Amarantha you have my sincere sympathy for the skin mets. Mine had ulcerated last year and I truly understand how horrifying it is to actually be able to see the cancer spreading. Great news about the bones and lymph nodes, hope all continues to go well for you. And your thoughts about your hair don't sound too perverse to me at all - my hair is currently at the awkward too short/too long stage where I can't do anything with it and I hate the way I look. I often think about trimming it super short again because after a lifetime of spending a half hour each day to style my hair, I've really enjoyed not having to worry and fuss about it this past year.
0 -
LoriCA how did they handle the ulcerating skin mets ?
I am actually back in the hospital, this afternoon my surgeon opened me up, cleaned out the infection, put in some super fancy kind of drain. I felt just fantastic afterwards, so relieved. But the bad thing is it will postpone my going back on chemo for two more weeks.
0 -
Amarantha mine broke through the skin within days of the first symptoms of IBC and until I started chemo it spread very quickly, landed me in the hospital for a week and I had a wound care specialist. It was cleaned with saline daily and at first she used silver rope dressing lightly covered with gauze. The rope dressing has surgical mesh and is used on cavity wounds. It absorbs all the nastiness and it's not a lot of fun to change the dressing yourself if you don't have daily help. Once chemo started healing the skin, we switched to SilvaSorb wound gel, but then my MO said he didn't believe the SilvaSorb was doing anything so I just flushed with saline daily and kept loosely covered (it healed better with very loose covering so the air could circulate). It responded to chemo immediately so we didn't have to take more drastic measures, but took about 5 months for my skin to completely heal (scabbing and then new skin growth).
I'm so sorry that you are back in the hospital and that your chemo is postponed. Gentle hugs and lots of healing thoughts for you. I hate this damn disease.
Lori
0 -
Lori, what an ordeal! After all that, your skin did manage to heal with the help of chemo. Is it completely healed then ? Do you remember which chemo worked ?
0 -
Yes amazingly it healed with very little scarring, for the most part I had new pretty pink skin with just some minor blotching in one area. Chemo was Taxol. We could see healing after my very first infusion, which really helped me emotionally.
0 -
LoriCA I'm so heartened to know you were able to heal and get pretty new pink skin. I can always hope ! I am afraid my chemo will most likely still be postponed. After six days in the hospital for the infection, I am having wound care twice daily at home, and my visiting nurse thinks it is going to take at least a month to heal. But I am not letting that stop my life. I did my trip to Toulouse for two exciting concerts, and arranged a visiting nurse to my hotel in Toulouse, and on Nov 1, my husband and I go to a wonderful spot off the coast from La Rochelle (Île de Ré) for three days to review three concerts, and are arranging a visiting nurse to come there as well. Yay ! Chemo is supposed to start up again on the 9th of Nov, but likely will be postponed because of the wound healing, even though, it is most urgent to begin !!
0 -
Amarantha I'm sorry to hear that your wound is interfering with chemo. Is it because Halavan interferes with the healing process, they are worried about your immune system being compromised, or what? Good to hear that you are getting out and having some fun despite everything you are dealing with.
0 -
Well that is what the nurse predicted would likely happen, but we'll see what happens ! Hopefully they will start chemo in time because I really really need it now.
0 -
Well, yes, good on you for getting to those operas Amarantha. Do you feel like writing about them? I'm sure hoping they'll get the chemo going soon, too, but obviously your immune system could be compromised and the healing process set back. Hang in there.
0 -
Hi TT, yes, I wrote two articles one on each concert. One has just gone up on the website and the other is still being picked over, I guess. Now I'm going tomorrow to for three days to a music festival on the Ile de Ré, I hope everyone will be very jealous ! hahahah I'm going to stay here : be jealous . And on Monday as soon as I get home, I get to have a special "negative pressure" wound care machine with a motor put in and have hospital personal coming by EVERY DAY to check on it, that's called at home hospitalisation ! The machine is called a PICO. hopefully it will speed up this process so I can have my chemo. I am so impressed by the technology available now. And so impressed the hospital is willing to work around all my voyages. I have moreo b trips planned for the 10th and the 15th. We are going to do this folks, it is going to all work out. Living life and being treated at the same time !
0 -
So...it looks like Herceptin is failing and I'm pretty bummed that I only got a few months on it when many women get years. It's been fairly easy to tolerate (all things considered) and I was hoping to be on it for a long time. Truthfully I'm not sure if it ever worked, I suspected a problem months ago because of skin changes but a breast MRI wasn't concerning so I put it out of my head. Then I thought I felt a small pea-size swollen lymph node about six weeks ago, but my husband couldn't feel it so I let it go thinking I was just obsessing. Now I have a golf ball sized lump under my arm and some pain, maybe a lymph node or maybe the original tumor. We gave it a week of heat therapy because there was a small chance that it was just an infected lymph node, but that didn't work and my MO is very concerned. Getting a new PET/CT in a couple hours to see if it's spreading anywhere else (my liver is my biggest concern, or if it's spreading to other organs), then we'll figure out a new game plan. I'm a little angry that my MO wouldn't agree to a new PET/CT months ago when I kept saying I thought something was wrong. He thought I was doing so well that there was absolutely no way the cancer could be spreading again and that I was just over-reacting. I kept trying to tell him that 24 hours before I was hospitalized and fighting for my life last year, I was kicking ass and taking on the world too. Going on to my third line of treatment in a year isn't the greatest sign for my long term prognosis, but I'm confident we can kick it back again.
TT I'm not sure if you get it in Australia, but the full episodes are available at the CBS online website. Unfortunately there are commercials every 5 minutes that you can't bypass. I can only record two shows at a time so I had planned to watch that one online because there are two others at the same time that my husband likes to watch.
0 -
Thats a real bummer Lori, and I'm sorry to hear this newsi. Looking at you stats you had nine months on Herceptin. Is this correct? Keep us posted on the PET scan results.
0 -
8 months actually TravelText, I had my first Herceptin mid-February and my last infusion mid-October, although by then it was clear it wasn't entirely working. I first suspected it wasn't working back in May, when he sent me for a breast MRI. I'm hoping this is an isolated spot and maybe the Herceptin has been holding it back in my liver and bones.
0 -
LoriCA, what crapalactic news. I'm sorry. We will hope with you that the Herceptin has been guarding your liver and bones. SB
0 -
Oh Lori, I'm so sorry. Stupid doctors, we know our bodies better than they think they do. Do you have the results of the scan?
0 -
Thank you SB and MoreShoes. I meet with my MO on Wednesday to review the scan results.
My veins have become so fragile that the first needle stick blew out the vein. Now I have a huge bruise that hurts like hell and I've been icing it all weekend. More bruising at the second injection site further down my arm so maybe that one blew out too. The tech is wonderful and very gentle, not his fault at all that my veins are a problem and he knew within seconds that there was a problem. I used to be an easy stick before all this crap. My husband is so wonderful that even though I kept telling him that I'm a big girl and can handle getting a scan all by myself, he drove over to hold my hand while I was getting the contrast media injection because the last time it took 20 minutes to find a usable vein & he knew it was going to be troublesome again. He joked that it was to protect the tech in case I decided to punch him haha!
Bleh. Even the "easy" stuff isn't easy anymore.0 -
Finding veins with your hubby around would concentrate the tech’s attention! What a great guy.Where do they go to in this case to get a vein?
0 -
A few times they had to use the inside of my wrist which is very painful & I'd do anything to avoid. The closer you get to the wrist, the more the tendons become an issue and the more it seems to hurt. The second stick this time was about 4 inches above my wrist & only slightly painful, the first stick was 4 inches higher than that and didn't hurt at all. The back of my hand is another option, but because I have no fat on my hands and my bones and tendons are very prominent,it's not ideal or easy for the tech (and not without pain). I have very small wrists and delicate hands (need a child-sized watch band, bangle bracelets slide right off). And we can only use one arm, my right arm is off limits. The tech said that herceptin coursing through my veins is probably making them worse. They aren't set up to use my port, so I guess a vein in my leg would be next option.
0 -
Oh LoriCA, it sucks !! when they blow the veins and make you suffer. I hate that !!! They need to get set up to use a port. That time will come. I have the same problems. Yucky yucky yucky. Yay for husband, punch'em !! I am terribly sorry to hear about your news. I pray an effective and easy to take alternative will be offered. Please keep us posted.
0 -
Oh Lori so sorry to hear about your news, and the vein thing makes everything seem worse. Sending virtual hugs and hoping Herceptin protected your other organs.
Thinking of you Aramantha. Please keep us posted both of you.
0 -
HI Valstim ! Mostly good news from me, I feel fantastic, I am so happy with my new bandages that exerce "negative pressure" and the wonderful hospital-at-home care I am getting. I'm on board for chemo to begin again on Friday and happy about this, because I can see the cancer skin infiltration continuing to spread leftward under arm, downward to tummy, rightward across the rubicon to site of right breast that was just removed, and upward from just removed breast including the skin over my port/catheter thing. Scareeeee. Nevertheless in wonderful spirits, and did a lot of IRONING today. hahah. Love to all.
0 -
My MO said my scan results were "weird". My liver has completely resolved, my skeleton looks fantastic and even better than last time, but now I have many lymph nodes showing new metabolic activity including above my clavicle and several in my abdomen, the primary mass is growing again, there's still skin involvement and they believe chest wall involvement. Have biopsy first thing tomorrow morning to verify if lymph nodes are cancerous or if there's something else going. I'm officially off Herceptin and Perjeta. He said my choices look like chemo or radiation,and he's strongly pushing for radiation but it will be a very large area and no easy thing.
Glad to see you are in good spirits Amarantha!
0 -
Oh Lori! Praying for you, for Amarantha and for me. It sucks.
0 -
Praying and sending good thoughts to you Lori. Glad you are in good spirits Amarantha. Hello to Moreshoes.
Hanging in there. I have so many post treatment ailments. Saw my MO and still NED. I have severe arthritis. going to try walking on my treadmill again to help.
Val
0 -
Had 5(!) biopsies done yesterday but here's the thing (and please excuse my rant). The purpose of the biopsy was supposed to confirm if the lymph nodes are cancerous or showing activity for another reason (he used the example of a symptomless stomach flu). I had grabbed a copy of the PET/CT scan report and read it later that night, and guess what? The lymph nodes in my right axilla where he ordered the biopsy showed nothing. Only the lymph nodes near my collar bone and throughout my abdomen showed activity. I told my husband that unless I was misreading the scan report there was going to be a problem at the biopsy. Well sure enough the doctor doing my biopsy was confused too because the order specifically requested biopsy of lymph nodes in my right axilla and both the PET scan and the ultrasound showed nothing to biopsy. In fact he had to get my MO on the phone to discuss with him. The doctor also told me that the breast MRI I had back in June showed that the lymph nodes beneath my chest wall had mets, which my MO never told me. Even though they didn't show up on the newest PET scan he took a look with the ultrasound but couldn't find, so apparently they've resolved. They agreed to do a new biopsy of the mass in my breast (which has recently exploded again), for what reason I have no idea. The only justification I can think of would be to see if the pathology has changed but my MO has never mentioned that. While we were at it the doctor decided to grab a few more samples (happy happy joy joy) in case some was needed for additional testing down the line (genetic, or one of the newer trials). Better to have too much than not enough, especially with the direction that research on MBC is going.
So this is what makes me mad - my MO kept pushing back against the idea of doing the new scan until my husband insisted. When we got the results back he said "This is why I didn't want to get one, it just makes things more confusing" and I don't think he even read the damn report or he would've known that he was asking for a biopsy of something that wasn't there to be biopsied. Five biopsies is not a fun experience and I'm really mad that there was probably no reason for it, then add in the fact that we weren't even able to confirm whether or not my lymph nodes are cancerous, which was supposed to be the whole point!! Unless the report shows that the pathology of the primary tumor has changed and that's why it's growing again, I am going to be beyond furious at the waste of time and pain I went through.
He also pissed me off when I asked why I was being taken off Herceptin when it was obviously working on my liver and bones (something made my liver completely resolve since I've been off chemo and it sure wasn't diet and exercise), he said "No, it's not working" and shut down the conversation. I wanted to discuss the possibility of something like Kadcyla, which is Herceptin and chemo combined, but he just shut the conversation down completely and refused to explain his reasoning.
I'm going to give him a chance to explain himself at my follow-up, but I think it's time to start interviewing for a new oncologist.
Besides all that, hope everyone haves a great weekend. California is burning again and I hope you aren't in an affected area SB? I forget exactly where you are but these fires are massive so I hope you are safe.
0 -
Oh Lori, you've nailed the case for having to be your own advocate during treatment for this disease. We all have one patient to watch over, the medical professionals have hundreds. Those that don't take notice, research, and ask questions end up falling through the cracks. Your Biopsygate story is a case study. And failure to discuss drug regimens is a sackable offence in my book. How can a patient dealing with all the cancer crap feel confident they are getting proper treatment when they aren't being listened to?
0
