Catholics
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Frank, prayers, and understanding too well of communication difficulty, but you may get a laugh. I have a life long hearing loss. Always managed by asking people to speak up, look at me, and repeat as necessary. With a hearing loss accents are even more difficult. My joke or whatever(can't find the word) is I'm by decent full Irish. The worst accent for me is the Irish, then British, then Asian Idian. The Lilt of the Irish that I love to hear, I can't bloody well understand. But the Irish tone is so soothing, I care not for the understanding, I just listen.
Very glad the nurse told you re: the right to ask for someone that you could understand. (I'm an old nurse---er--retired nurse). Please pray with us for Penny on the 28th during her next ablation L&H&P's sheila
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prayer for you Frank, Penny & all.
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I was scheduled to have another liver ablation on the 28th. My most recent MRI showed that the last one was successful, however, there is now a cluster of about 8 tiny new spots that may or may not be cancer, plus one lone one that probably is. My oncologist and radiologist have decided to cancel the ablation and put me back on chemo. I have been off treatment for 3 months and have enjoyed it, but being stage 4, it's necessary that I get back in the saddle in order to try to keep everything in check. My oncologist has been trying to get insurance approval for a treatment called pertuzumab but has hit a brick wall. They haven't even denied it so we could at least appeal it. They just keep saying it's in review. I could try to get it for free from the drug company but our income is just over the threshold. In the meantime, she's putting me on taxotere and herceptin in the hopes that we can eventually add pertuzumab. I start this Wednesday. It's all in God's Hands.
Blessings,
Penny0 -
Keeping you in my thoughts and prayers, Penny.
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(((Penny))) u'r in my prayers
I think ins. Co. are a miserable lot.
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Hello Sisters
Well the story so far is :-
I'm going for CT Scan on Tuesday 26 February. All being well I start on a drug trial on 4 March. I was supposed to start a while ago but the parameters for these trials are set in concrete - NO EXCEPTIONS. Two of the things are, that to go on this particular drug test, you must be HER2+ and the trial must start within 3 weeks of a CT Scan. A biopsy in 2010 showed that I'm HER2+ but at the last minute we were told that the drug company wanted those archive results BUT wanted a fresh biopsy. Had a biopsy on the Thursday 7th Feb. and were to get the results back on Friday of the following week. Unfortunately that put us 1 day outside the 3 week window of the CT Scan. So we couldn't start the trial till I have had another Scan which is next Tuesday then all being well, start on 4 March. Because of the frequency of the tests which have to be subsequently carried out, the trial has to start on a Monday so that we don't end up having laboratory tests at the weekend.
You will have heard that Tony Bennet, the singer, left his heart in San Francisco. Well I have left a part of me in USA. Two little pieces of my liver tumour, from the biopsy, are in a lab somewhere in USA. I don't know why but apparently that is where the samples had to go for testing re HER2+. The lab is either called Westmount or else it is in a place called Westmount. So no doubt all you sisters on the other side of the big pond will give a big welcome to my little pieces of tumour
. Even if they are unwanted by all of us I'm sure you will give them a big hug to stop them from feeling all alone 
. When I got the biopsy a lab technician was standing by to do something with the samples - I don't know what. A courier was also standing by to take them to the airport for them to go onto a plane bound for the USA. That was the same time that the storm hit the Eastern seaboard and closed the airports but I think that plane just got in before the airports closed. Penny I hope that you soon get approval for your drugs. Thinking of you and saying a prayer for you. You may remember that I was on Herceptin for 15 months and had very few SEs.
Camillegal you are very ladylike in your comments about Ins. Companies. That's not quite the description I would have used LOL. Although you do know that over here health treatment is free at the point of delivery.Take care all. I will let you know how things progress.Frank0 -
Frank, glad to hear things are progressing, albeit slowly.
When I had my tumor removed I called it a divorce and was thrilled to have it in a lab someplace in Orange County (the next county over). The visualization of that disobedient piece of flesh sitting isolated in a lab someplace really did my heart good.
I'm Her2+ as well so I always read your posts with great interest.
Keeping you in my thoughts and prayers...
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Lee A - I love the new picture! How are you feeling?
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Hi Linda - I'm feeling okay. Three down...three more to go!
How are you doing?
Re: the photo - it's a halo wig. If the cap comes off Friar Tuck appears!
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LeeA -I know a couple other ladies that wore those, cute! I'm doing ok. Yippeee for half way!!!
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Linda, it's sort of off-topic for this thread but did you end up trying the curcumin/bioperine?
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Lee - I did, but it really ate up my stomach, and caused some issues on the other end, I ate it with meals too, so stopped, my husband is taking it, doesn't bother him. Have you heard of that before?
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Hi Linda, no I have not! Did you order the 1000 mg or the 500 mg? I've only taken the 500 mg. I started out with one pill per day for a week or two and then built up to two per day. Sometimes three. I think I might have read about stomach issues to start out with - which is why I started it that way (can't remember where I read it though!).
My husband is taking it now as well. So is his dad and unbelievably enough - he was close to needing spine surgery a few months ago and now they have a trip planned to Central America in May!
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Frank it was nice hearing from u and it sounds like things are looking up. But I doubt that there will be a song about I left part of my liver in the USA. So don't wait for it. Good Luck Frank.
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Frank we will take good care of your biopsy samples over here in the US :-)
So excited for you to start the trial. Perhaps this is your miracle! You are starting it during Lent. Perhaps you will have some good news by Easter. I will continues to pray as I know others are as well. We are here for you across the Pond!!
Cheri0 -
Frank, so good to hear from you. Wishing you all the best with the trial. Somehow, I can't see 'I left my liver tumour somewhere in the USA" as a hit but you never know. Your tumour sample is better travelled than some people I know. LOL
During our last Novena, I asked for your prayers for Ken...a young man that I sing in the choir with at church who was suffering from leukemia. Sadly, Ken lost his battle and passed away last weekend at the age of 37. His funeral was yesterday. Very sad but we gave him a beautiful musical send-off. May he rest in peace.
Penny...praying for a successful ablation on the 28th.
I've had a busy week. My Mum turned 80 last weekend and my sister and brother-in-law came over from England for a week. Had a great time catching up with her. It had been 5 years since I had seen them. She went home last night and I was very sorry to see her go.
Keeping you all in my prayers.
Blessings, Michelle0 -
Michelle so very sorry to hear about the death of such a young man. So sad.
But I'm glad u had time with u'r sister--it's never enough tho. I'm super close to my sister we talk everyday and we don't live very far from one another. She's going on a well deserved 2 week acation to FL/ and I'm freakin out just for 2 weeks. She's stage IV and doing well so we're each others sounding boards and each others best friend. I have been blessed with a wonderful family and wondrful friends and now more with beautiful people from these threads. So there is a lot to be Thankful for.
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Yoo-hoo everyone-- been on a break! Great news Teresa TT has posted. Prayers answered. She's been MIA since last august. Will be back L&H&P's sheila
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Thank you for this post. I am new here and believe in the power of prayer.
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Valb welcome--Sheila (sas) does an amazing job keeping things going and prayers ready for all of us. U are in a good, comfortable place here.
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welcome Valb.
Prayers going out for all across the world.
May God bless us all with a cure, in the mean time make more effective, affordable, treatments.
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Thank you for the Welcome.
Prayers for you all too.
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Cami, I am just a part of all that is here lovey......we come together when we are needed. This thread is different than others. ]
Here we talk of and believe in God and the Saints, and Mother Mary. We believe that communal prayer is successful.
L&H&P's sheila
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Valb--Cami is so sweet----welcome.
the evolution of this thread is like others.......We come based on need of the moment or time. We on this thread believe similarly. But if you look at the header thread written by Laura, it is ecumenical. Inclusive. So, come as your need may be. L&H&P's sheila0 -
I was so happy when I found this thread to see others with the same beliefs. I have not been diagnosed and have had Mammo, Ultrasound, Halo Test, and MRI - all have come up negative which I know is good but I have daily bleeding from my right side as well as a nearly constand dull pain. Today my doctor told me to see a surgeon and I have an appointment. It's all be a long, complicated and frustrating process as my doctor does not call me with results when she gets them, in fact I have to call her and it's hard to get her to return my calls. Hopefully everything will go better with the surgeon. I have a lot of family history of not only BC but many other cancers and currently have an aunt (mom's sis) fighting pancreatic. I have not told my family (just my husband) yet as I don't want to worrry anyone.
Again, thanks so much,
Val
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Welcome Valb!!
Cheri0 -
Val, Sounds like it's time to change PCP's, Or whomever it is that isn't returning your calls. Call around to friends and family that you respect their opinions about PCP's. The practice that I'm in has two doc's that are exceptional and the rest are okay(5). I believe God lead me to my PCP during the lowest point of all my trouble, almost to despair point.
The practice I'm in has two offices, & 7 docs that travel between the 2 offices and several ARNP's at each office. One office is open 7 days a week, the other 6 days a week. all docs have private patients, but walkins are taken at both facilities. In fact the general public likely has the preception that this is a walkin clinic. I keep encouraging them to do more advertising to get the word out about what I'm telling you here.
They have the ability to do IV's, Ekg's, Injections (not so unusual, but I think the scope of meds they use , is larger than an average office). They have a full set up for cardiac arrest. Not that they don't activate EMS when someone walk-in and has the big one, the difference is that they are properly prepared for an occurence. Lab on site open at 7am. Doc office hours are 8 am to 8pm. M-F with 2 docs on duty and 9-5 Sat&Sun at main office, 2nd office Sat 9-5. I mention this all b/c it may help you think about choosing a new practice. This group functions to provide all around service. Hour availabilty truly a help to those, whose work hours would require them to take time off work were these hours not as they are. If I need a same day appointment---I get one or simply walk-in. Planned visits are nice, but when one wakes up with "something new brewing" instead of going to ER, off I go to my docs office. Saved many an ER visit and COST. Same day appointment is my usual copay($10), whereas, had I gone to ER my insurance copay is $150. In fact years ago I used this practice for the episodic visits and had a PCP doc that was the only one in his practice. Never could get a same day appointment. The usual "go to ER, if you feel you need to be seen today, we can fit you in, in 2 weeks". Yeah right, I'm sick today.
As a business model providing care, this groups approach is excellent. Since you are in the regretful situation that none of us like to be in, having the type of access to your PCP or another doc in the office --where your records are at is majorly helpful during this time. With this damnable BC or any chronic illness, your episodic visits will be more than in past years. Hope this all makes sense and that you can find a practice that is close to you that has the same type of business model.
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on aproject L*H*P's sheila
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A couple of days after my most recent chemo, my face broke out in acne but went away after a few days. It was not bothersome, just ugly. But now all my skin is itchy. My research on this chemo drug (taxotere) tells me that these are common side effects but, given my notorious reactions to meds & chemos, I just had bloodwork to determine if this is yet another allergic reaction. I'm not sure if the oncologist will keep me on this regime or not. If it's just a side effect, they may try to treat the itchiness but if it's an allergic reaction, they may want me off it (allergic reactions can get worse, such as breathing issues). I am slowly but surely exhausting all my options. I sure wish God's Will wasn't always so tough. I will post an update when I know more. Please keep praying for me and mine. Thanks.
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Penny will do L&H&P's sheila
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