How are people with liver mets doing?
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just inserting myself in here regarding the port... i put emla cream (rx strength prilocaine and lidocaine) 2 hours prior to access. One hour didn't do it. I glob it all around and on the port and put saran wrap on it. Do not rub it in. I feel nothing. I know a gal who leaves it on longer than me.
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Artista raises a good point. I modify my suggestion on timing. Probably each person should read the suggested range of time on the tube and then experiment within that to find what works best for her.
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I have gotten to the point where I don’t use any numbing in my port. I just have them stick me. I guess that is what happens after almost 8 years of treatment.
I’m on my second port by the way. As I had the first one taken out about 5 months before I found out I had metastatic disease.
I do remember the cream from the first time around and it was nice. At my current center, they ask if you want s lidocaine injection first. That makes no sense to me Since that means getting stuck twice. Not for me.
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I also don't premedicate my port. My center offers a lidocaine spray. I have tried it on several occasions and find it more painful than the needle stick itself.
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Spray doesn't work. Need the glob of cream to set for an hour or more.
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Hi Lumpie. That is a difficult decision. I’ve been following the progress of DS-8201 for some time as I’m also very interested in it. That said, I was one of those who had a good run on TDM-1 ... nearly 3 years before my recent progression in spine. In all that time, it kept my liver clear and I found it to be very tolerable. No pre-meds and minimal side-effects. I guess my thinking would be that if DS-8201 is considered a bigger gun than TDM-1, then perhaps give the TDM a whirl first and save the bigger guns for later. If DS is as good as we hope and it’s side effects not too severe then it should still be available down the road, probably with fast track FDA approval, right? Isn’t it already in Phase 3 trial? Meantime, you may be one that gets a good, long run out of TDM. Is there any restriction on doing DS after TDM or vice-versa? If so, that’d be a major factor to consider. Please let us know what more you learn and what you decide.0
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Shetland - Yes I had the topical anesthetic on. They dug around for 25 minutes and could not eadily find the new port. Tissue was purple and very swollen over it. I was able to not cry but it was brutal.
Tomorrow should be better as it has been healing for 1 wk and 1 day...
Gumdoctor
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WELL...
Here I sit at home after my chemo appt...I feel just fine because...THEY REFUSED TO TREAT ME!!!!
I have slight neuropathy and they called my ONC and she said to withhold tx and talk with her about it at appt next week!!!
I am livid. They accessed my port. Drew labs. Had me wait for 1.5 hrs to tell me this.
I am most livid that my Dr Angel did not even ask me what I wanted to do. Summarily NO TX TODAY.
Now I am terrified. The large one grew from 4-9 cm in 2 weeks of no tx after Xeloda. How big will it be next week?
OMG
Gumdoctor
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Yikes Gumdoctor. Just for neuropathy? I would be livid too. Makes no sense.
I did get my old port out on Tuesday, Wednesday Cycle 1, day 1. Except for unexpected pain from my three chest incisions, my infusion the next day went well. None of the expected SE have happened. So far so good.💞
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Gumdoctor, when I heard you were feeling neuropathy after your first infusion of abraxane, I thought that was very soon and you might need a dose reduction. But why do you have to wait a week for it?! Your doctor should have been able to make that change and let you continue, in my opinion. But I’m not an onc. I would insist on talking with her tomorrow. Remember, you have had a dose of abraxane, so the situation is not like those two weeks of no treatment after xeloda failed. If you stay on abraxane, please keep your hands and feet cold, and drink lots of water right after the infusion, to reduce neuropathy. At that point it has done its job and you want to to flush it out to minimize side effects. I’m so sorry you have had to deal with the port thing and now this!
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I called and left voicrmail from the clinic today. I sent a relatively calm email via the portal. I expect an answer via portal or a phone call tomorrow.
I am nost upset that the decision was made and I was not given an opportunity to object.
Gumdoctor
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Hi Gumdoctor. I am puzzled why your MO did not talk to you after Tx was postponed, even if it was only to examine you due to the reported neuropathy.
I think your MO's behavior is unusual and I am sorry this has added stress to your life. Hopefully, your MO will explain and you will regain trust.
You should be resting and pampered right now, not being upset.
Keep us posted.
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Thanks SandiBeach - She was not at the same clinic I was at today. Nurses talked with the team. I could not get thru.
I have left voicemail and email thru patient portal. I expect at least an email thru portal or phone call tomorrow.
Gumdoctor
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Gumdoc: Sorry you are dealing with this. Glad you have fabulous support. I ice my port for just a few minutes right before they access it. Makes a big difference for me. No Tx... that seems bad. I'd let your doc know you are eager to go ahead! Get her rationale for not proceeding!
Leftfoot: re the trial...I went and signed forms to apply today. Unofficially they told me that every patient at their site had improved and that not one had had to leave the trial due to unmanageable side effects. The trial does not have a crossover arm which is a bummer. That means that if one is put in the TDM1 arm and it fails, you don't get to "cross over" to the trial drug. Most trials seem to offer crossover. I gather they hope to get FDA approval in as little as a year which sounds really good. Of course, things often don't go as quickly as one hopes. Sure hope you get on this since the results seem so promising.
MargaritaMS: yes, they are hoping for fast track approval. Yes, it is my understanding that it is in phase 3.
Thanks all!
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Lumpie, it does sound very promising! Hope you get in and get a great response
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Shetlandpony, any biopsy news yet? You okay?
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Gumdoctor- I am just reading your post. I am livid for you. Ok so maybe the onc felt you needed to back off treatment due to neuropathy so soon, but how about a lower dose like Shetland said. Or postpone treatment for a day or 2 then lowered dose at that time. But not canceling treatment totally. And I agree not to discuss with you is wrong. That is what I mean about my recent rants (yesterday on several threads). We NEED AND DESERVE communication with our docs. Include us in the plan. And as Shetland said, you do have a dose under your belt. Not like when you were off all treatments before (growth issue).
Grannax- Glad you are doing well after dose 1. Prayers coming your way for continued success.
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Gumdoctor, I can imagine how angry and frustrated you are. The medical team handled the situation poorly and showed a lack of respect for you and the situation. I do understand why your MO wanted to delay treatment for a week, but someone, preferably your MO should have discussed it with you and explained the reason for the decision. Neuropathy is the SE that my MO has always been most concerned about. He said that neuropathy from the taxanes, Taxol and Abraxane, can be permanent. He explained that if I experience neuropathy, he would put off treatment for a week, then reduce the dose. If neuropathy Worsens, he would discontinue Taxol. Skipping a week of treatment due to SEs is not uncommon, but the patient certainly deserves an explanation. I had to delay Taxol for two weeks due to very low blood counts. I then resumed treatment at a lower dose. The MO did explain it to me. The difference might be that my cancer center’s routine might differ from yours so it is easier to talk. I always see either my MO or occasionally a PA to discuss blood tests, have brief exam, and discuss SEs before I have infusion, so if there is an issue, it is discussed right then and there. That is not an excuse. They still should have have had someone speak to you. There used to be someone on these boards who did experience neuropathy from Abraxane. Her MO ignored it for far too long. She eventually changed doctors, but the neuropathy was permanent and affected her hands, feet and legs. Icing during infusions is said to help in prevention. NatraCure cold therapy socks work well on the feet, and ice packs can be used on hands.
Hugs and prayers from, Lynne
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Another good night of sleep. I feel good, no SE but I'm taking Mirilax to hopefully keep constipation , from anti emetics , in IV, at bay. I hope they won't put so much in next time. I told them would not vomit. Why won't they believe the patient? Better yet, ask the patient. Right, Gumdoctor? So . sorry you're having trouble right now. We don't need all these unnecessary stressors. Don't we have enough stressors just being stage IV?!/?!?. What other SE are you having? Where is your neuropathy? Feet or hands? Praying for better communication with your MO.Although, it's universal these days
I'm sure, being a doctor yourself, makes. It even more unacceptable to be treated this way.💞
I
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Gumdoctor, I second what Lynne just said so well. Grannax2, it’s good to hear you have started your new treatment and are doing well.
SandiBeach, thanks for checking on me. My onc let me know right away that the initial pathology from my liver biopsy shows breast cancer, not bile duct cancer. This is actually good news because bc is more treatable. We are waiting for more details, such as whether it is more ILC. The IR could not get enough tissue for genomics so we will do a liquid biopsy. Then we can make a treatment plan which may include ablation. I am also interested to know what will be proposed regarding the other tumor that caused the bile duct blockage. Perhaps if the new treatment kills that tumor in the next two or three months we can simply remove the temporary stent. I’m on two pill antibiotics now that I am home from the hospital. The fever and discomfort are both gone now so I know the infection is gone.
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Gumdoctor, I hope you were able to contact someone at your doctor's office today regarding your treatment. Sorry to know that the dr withheld the treatment due to neuropathy. Hopefully your dr will resume your treatments with a lower dose soon.
Grannax, glad to know you are doing okay after the infusion. Hope all your treatment cycles go as smoothly.
50sgirl , I agree with you- Natracure has good feet cooling socks. I have to change the gel pads after about 30 mins since these get warmed up quickly. For hands, I have homemade gel packs, which seem to work okay so far. I have been on Taxol since April first week.
I have increased lower back pain this week. My MO has ordered an MRI of the whole spine. Last month PET scan showed reduced activity in liver mets but mixed results with bone mets (some were stable, some had grown). I hope Taxol works on bone mets. Anyone had good results with Taxol for bone mets?
Have a good weekend! Stay cool.
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S3K5, I have been on Taxol for six months, and I had scans two weeks ago. I have had bone mets throughout my body since being diagnosed 4 years ago. The latest scan shows that they are all sclerotic “probably due to response to treatment”. It seems that the bones are healing. This is the first time I have seen that in a scan report, so I would say that bone mets can respond to Taxol. I was told that it takes time to see healing in the bones, so don’t give up hope.
Grannax, I am glad you are feeling well. I wish I could explain why nurses don’t always trust our words. It seems logical that the patient would know her body and reactions better than anyone else.
Hugs and prayers from, Lynne
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Shetland- Glad the biopsy was BC not bile duct cancer. Good grief happy it was BC. Crazy. Hopefully the treatment will kill those buggers.
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Thank you so much for your concern.
I did get a call from my MO's nurse about yesterday. I was not in our usual location for the first 3 infusions (3rd appt is next week) because this was essentially an emergency. They scheduled me where there was room. My MO was out of town and will be back next week when I see her before we start tx again. So the decision was made by MO's Nurse Pract. I hate that...
MO's nurse was really good and stayed with me on the phone through the screaming and crying until I got it all out. She convinced me that our MO would have made the same call. She also apologized profusely for the way the conversation went down between the infusion nurses and me yesterday.
It has taken me all day to come down but I have to enjoy my days between today and next appt next Thursday...otherwise cancer wins.
ON A DIFFERENT NOTE: THE ARMY FINALLY APPROVED MY EXTENSION REQUEST FOR 90 DAYS.
My modern Perry Mason attorney is on the case mow and called to tell me this great news. We need much longer than 90 days but it buys me time to get more things in order and takes a huge stressor off my plate for awhile.
Thank you all for your support. It helps me to get thru these dark days...
Gumdoctor
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Today was the beginning of crash day after steroids. For some reason it's lower back pain that is out of the blue. Maybe it's muscle but doesn't really feel like that. It reminds me of when I took Taxotere. Anyway I hope it's better tomorrow.
Shetland you have been through the mill. I'm glad you're home. Praying for answers and good TX for you.
Gumdoctor glad you got some answers that make some sense. Yay for 90 days!. 💞
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Shetland, It feels crazy to say it, but I'm glad that they confirmed breast cancer mets instead of a different cancer. Mostly, I'm really glad that you are finally through the diagnostic process! I hope that your new treatment will be very effective.
Gumdoctor, It's enfuriating that a nurse practitioner made the chemotherapy call when your oncologist was away! In my opinioin, she/he does not have the same level of training and should not make those types of calls. It does explain why you were not consulted. My brilliant oncologist will be going on a 2 month sabbatical and I'm very concerned that her nurse practitioner will be trying to fill her shoes.
Grannax, I hope that the back pain improves and that the new chemo is VERY effective.
Best wishes to all! Theresa
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Candy and Theresa, I know, right? Crazy to be glad to “only” find more bc. Grannax2, you put words to it for me — yes, I feel like I have been through the mill, the ringer, whatever it is.
S3K5, I am glad you have the scan ordered. Lynne, yay for healing bones!
Gumdoctor, I am so glad to know that you have Perry Mason working on this for you. I swear, if the army screws you over any more, there will be a whole bunch of stage iv bc patients marching on ... wherever we need to march! We are some pretty tough bitches and they had better watch out.
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Shetland- I have wished before that we Stage 4 BC patients could gather in Washington and march on Congress to change the laws about MBC patients getting Medicare and SSD payments faster. Make our voices heard. We are tough!!!!
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I don't think I posted these...if I did please forgive my chemobrain...
This is immediately after my Farewell to Hair Party on Wednesday...i am the female on the right (hard to tell I know...on the left is a male)...60+ people, pizza, cake, music AND A LIVE FACEBOOK VIDEO of them shaving my hair off...these people love their Colonel (me) and it was great to do this with them than to be alone...and miserable...
Shetland...yes you are right...we can be tough and mean and fierce...
Happily, my own Perry Mason attorney told me to let him do all that for me and for me to focus on my treatment...love him...so much...and he came through for me...
I am much calmer than on Thursday...enjoying my lack of Neupogen injections...lack of nausea...lack of having to take extra meds after chemo...enjoying the fact that they MADE me postpone tx...might as well enjoy my time off...kind of like a snow day in grade school...
So I put my feet in my pool (have to wait another 3 wks, because of the port, to get in the pool)...what a rough day I had...NOT
Gumdoctor
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Gumdoctor, I love your post SO Much! And that cake! Tough bitches unite!
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