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Old 01-22-2016, 01:52 PM   #21
agness
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Re: Need input!

What a nightmare for you. It happened to my friend as well, they didn't mention the 1cm bone lesion last year, she was in a trial, the bone lesion spread while the others decreased. She wasn't told.

Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what.

Xeloda has been doing some amazing things for women on the Inspire.com forum so I think that isn't a bad step for you. It might just be your magic bullet. Think positive things.

Also, see about whether rads might be appropriate -- if it is still small and you can get to a proton center you might be able to nuke it and make it go away for good.

Also, you might have a mosaic of cancer cells -- some more HER2 and other more luminal/ER+ -- your body is pointed in that direction in its response. Own that even if you docs seem to not. They sometimes get fixated on one type of cancer type and that isn't the case at all and you are seeing that at work in your body. Use your body as the guide.

Ask questions and if I can help I will.

Hugs.
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 01-22-2016, 04:03 PM   #22
Juls
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Re: Need input!

Hi support wife

I think you are right - we should have regular bone scans as well. This bone scan was only my second in nearly 3 years. When I was on trial drug, Oncologist could ask for private scans if she thought appropriate. I was never considered to need one! Myself and Medical team have all been trusting the CT scan.
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Old 01-22-2016, 04:41 PM   #23
Andrea Barnett Budin
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Re: Need input!

I 2nd ev word Agness wrote in above post.

Get copies of ev report and read them. I need to google a few key words sometimes but I get the gist. So will you.

Compare all reports to previous ones.

Remember WORDS MATTER. I know you know this.

NOTHING should be kept from the patient.

My breast surgeon in 1995 who was wonderful in all ways possible confided in me that he hated trials. Because of things such as withholding info you would hopefully ordinarily tell the patient.

B/c they stick to a certain protocol, regardless of what is going on with you, and often to your detriment. I have witnessed this first hand. I was outraged. Clearly the chemo wasn't working and the cancer was spreading (while on chemo) and the onc kept saying let's wait and see with the next set of scans (in 8 wks). And then he did the exact same thing again.

She kept spreading and they kept her on the chemo that obviously wasn't working. Till they stopped all chemo, period, and let her die...

So, what I'm saying is stay positive, be alert, be nosy and noisey...!!!

AGNESS -- "Every patient should get a copy of all their medical records and read through them. Don't trust your doc or your tumor board's interpretation. You want to know what is what. "

You have the right to know what is what.

And again as Agness says, listen to your body. You could have a mosaic of different cancer types and you have to viewed in that way, with that in mind. No cancer is the same as another even if they have the same pathology. Every "body" is different. Responds differently. Your tx must be tailored specifically to you and what you have going on.

They spotted bone mets and didn't order bone scan?? That sounds not right.

I would discuss this and request this. It is obvious that it is needed, no?

You had mentioned xray and seeing orthopedic surgeon a while ago, or is my sense of time totally messed up?

We are all with you, Juls. Post away.

Hugs,
A.
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-22-2016, 04:48 PM   #24
Juls
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Re: Need input!

Hi Ann
Thanks for your reply. I really don't know what to think or do at the moment.
Yesterday at hospital was a bit strange. My usually very decisive Nurse - indecisive. They just keep repeating that things like this happen all the time. Not very reassuring!
I can ask for my reports but not freely given. Funnily enough my Nurse has taken to reading them out fully to me. Never did this before.
Re bone lesion - size not mentioned - but reckon femur is the problem as pelvis lesion not being mentioned very often.
Thanks for input re Xeloda. I was not sure if it was any good. The decision to give me it took no time - I felt that it was dished out without much thought. Also I am strongly ER+ but Femara removed immediately & this concerns me.

Rads have not been mentioned so far but Orthopaedic Surgeon has. I am concerned that femur lesion is already a problem as leg been a bit uncomfortable. Not sure if there is a proton centre here. Only a few centres in Scotland & not sure if each centre has all types of rad treatment.
I was originally diagnosed as strongly triple +. Could have changed.
Can you help me with - "your body is pointed in that direction in its response" Not sure I follow?
Have been asking questions & been forthright in my approach - not sure they like this. My Nurses parting comment was "I know your not happy with us at the moment." Said not personal but very disappointed that lesions missed in Ct's ,5 times! They spent 3 years looking at a tiny mark on my back that was not cancer (to the point of being fixated on it) and in this last report actually wrote not connected. Wish they had spent as much time studying all scans as they did on this tiny mark.

Now having a problem with dental treatment and Zometa. Nurse scared to give me it yesterday as root treatment to be done in next week. Dentist totally confident about doing it. Had to leave hospital yesterday without having 1st IV of Zometa. In a no win situation.
Any help/thoughts etc much appreciated.
I seem to be moving back a step every time.
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Old 01-22-2016, 05:03 PM   #25
Andrea Barnett Budin
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Re: Need input!

In googling Zometa and dental work I found this (below). They are being cautious and covering their asses and perhaps doing the right thing with their advice re dental work, Juls.

Your doctor may recommend you have a dental exam for preventive tooth and gum care before you start your treatment with Zometa. This is especially important if you have cancer, if you are undergoing chemotherapy or using steroids, or if you have poor dental health.


Some people using medicines similar to Zometa have developed bone loss in the jaw, also called osteonecrosis of the jaw. Symptoms of this condition may include jaw pain, swelling, numbness, loose teeth, gum infection, or slow healing after injury or surgery involving the gums. You may be more likely to develop osteonecrosis of the jaw if you have cancer or have been treated with chemotherapy, radiation, or steroids. Other conditions associated with osteonecrosis of the jaw include blood clotting disorders, anemia (low red blood cells), and pre-existing dental problems.

Avoid having any type of dental surgery while you are being treated with Zometa. It may take longer than normal for you to recover.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-22-2016, 05:12 PM   #26
Juls
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Re: Need input!

Hi Andi

Had bone scan on Monday and leg/pelvis x-ray yesterday.
Bone scan confirmed 2 lesions in area mentioned before. X-rays being sent to Oncologist and Orthopaedic Surgeon. My Nurse did remark that if a major problem "x-ray staff would not have let me leave the x-ray unit or would have called her to stop me leaving ward." So can't be in imminent danger of fracturing my femur. I was a bit p..... off with this remark and said that "I sincerely hoped I was not at that stage already" Talk about making things worse!
I can't shake the feeling that my treatment is not right for me & that I am looking at hip joint replacement (worse case scenario). Added to this is the indecision about zometa and dental treatment.
Its a bit worrying when your normally decisive Nurse becomes indecisive and uncomfortable with you. Should have insisted on Zometa yesterday. So on Monday I will have to go and speak to my Dentist again & ask for reassurance for my Nurse, more than for me.
As I said before - one step back again.
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Old 01-22-2016, 05:23 PM   #27
Juls
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Re: Need input!

Thanks Andi
Good to know that info about Zometa.
My Dentist was extremely confident about treating me in next few weeks as I would only have had 1 IV of zometa. Had tooth removed last week because of imminent zometa & root treatment to be done in next week. Also upper jaw work less of a problem than lower. I wonder what you are meant to do if you have toothache or break a tooth when you have been on zometa for years. Apparently bisphosphonates stay in body for up to 10 years!
Confused & more than a little p..... off!!
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Old 01-22-2016, 05:24 PM   #28
Andrea Barnett Budin
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Re: Need input!

I understand and it is all being handled poorly, I agree.

Nurse is advising. Doc seems absent. Assume she is repeating his instructions but can't be sure.

But from googling it does seem prudent to do all possible dental work before NOT DURING Zometa.

Seems easy enough to do.


I doubt anything even in writing from the dentist will assuage your team's concern about the possibility of damage to the jaw if done during Zometa. I'm sure you don't want bone loss to the jaw so why are you resistant to doing whatever need be with your dentist immediately, to speed the process.

Doesn't seem outrageous, but perhaps I am not fully understanding your reasoning.

Yes, you surely have lots to be dissatisfied about with your team. And I am proud of you for not only expressing your disappointment but doing it clearly.

If they are displeased with you standing up for yourself (as you rightly should and must) that is their problem. They may be accustomed to -- 'I'll let the doctor worry about that' patients. They absolutely would be distressed by me I can assure you.

Why weren't they telling you and / or watching the bone lesion 5 x. How often are your CTs? Why didn't they order a bone scan long ago? Why aren't they on top of your medical situation?

Seems like the nurse is stuck between you and the doc. Can you not communicate directly with the doc? Send him a FAX. That's what I do. Then my concerns are in writing and must be addressed. My FAXs are always followed up by a call from the doc, as his/her name is in the top line of the FAX. TO _______________...

FROM: My name
My phone number
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-22-2016, 05:47 PM   #29
Juls
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Re: Need input!

Andi
Yes- Apparently as I am not on drug trial now - Doctor does not have to see me every cycle. I was asked yesterday if I wanted to see her but said No. Would rather wait till x-rays checked.

Dentist trying to do all treatment asap, but tooth removed was next to tooth needing root treatment so she wanted it to heal a bit first. Also next appt available is 3/2/16 unless cancellations.

Apparently other bisphos. can be given orally and don't affect jaw as much but they don't seem keen to give them. Cause stomach issues & need to be taken daily etc.
They only noticed the bone lesions on last CT as now obvious & they knew where to look - so looked back at all my CT scans & noticed that there was a "subtle change" in the 2 areas last January! CT's were 9 weekly.
My Daughter's friend is a Doctor & she said the same as you - put in writing and they have to reply. Not sure whether to do this at the moment. They are well aware I am not pleased with situation. I know things can be missed but in 5 Ct's! Can forgive first 2 Ct's but latter ones not so much.
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Old 02-04-2016, 11:36 AM   #30
Juls
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Re: Need input!

A step forward ?
Or maybe not!
Dentist yesterday & tooth filled - after all this didn't need root treatment.
I can now have Zometa.
Today I call Nurse to arrange Zometa asap & I'm told just leave to next visit for Herceptin. All of a sudden no urgency!

On a plus point - I now know more about bisphosphonates & dental treatment and the risks are the exception not the rule.
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Old 02-06-2016, 01:25 PM   #31
Andrea Barnett Budin
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Re: Need input!

So Juls, that's great. Dental work over. No need for root tx. Can move forward with Zomenta.

Now they say let it wait till next visit. There it is -- words. Again. They have so much power. We give them so much power!

We hang on their every word, their every pause, deep breath. We see their telling eyes and their body language and we KNOW what they are thinking and it can be very scary.

I must wait till next June to re-visit my discussion about omental caking being written on my CT script as the reason for the test. My point was missed. Oh, we use all different words, doesn't matter. Maybe not for the purposes of the insurance company but to the patient, who sees and reads every word and the agitation it causes -- WORDS MATTER.

Especially when we see a word we haven't heard before in reference to our situation, we become inquisitive and we google and we are emotionally impacted. I want to repeat that reality to my onc who missed my point and will continue doing oh that, whatever, with other patients. Stop thinking about the insurance company and remember THE PATIENT. We are living in a very precarious place and doing the best we can and we need you not to forget that midst your busy day.

Just saying.

Glad you got to know more than ever wanted about bisphosphonates & dental treatment and the risks are the exception not the rule.

But now you can advise others when they are in need.

Sigh.

Keep us posted please.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-06-2016, 02:37 PM   #32
Juls
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Re: Need input!

Hi Andi
Yes - it's words again. Pause and think should be a must before they talk.
Re the bisphosphonates - my dentist told me that she checked with an oral cancer specialist, who confirmed what was & wasn't suitable. (She wanted to make sure she had correct info) Then dentist called my nurse to reassure her. Apparently didn't go well - Nurse actually telling Dentist how to treat & that most root treatments fail! Fortunately dentist is not easily offended! Would be funny if not so serious.
Will get zometa next week - not the treatment I want but they will not give me Denosumab. Apparently I'm too young, don't have kidney problems & it is expensive. Guess which one I think is most relevant.
The plus point in this is I have found a great dentist who wants to work with me and have me participate in my treatment.
Hoping Nurse was just having a bad week & ok when I go in on Thursday.

Your right with - Sigh!

Re your CT report -
Do you have to wait till June. Seems a long time.
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Old 02-06-2016, 05:49 PM   #33
Andrea Barnett Budin
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Re: Need input!

Shame on that nurse with the bad attitude. I have meant a few, though it's rare.

Re my CT -- I get same day reports. I go to a place that does that, not to the Imaging Center that doesn't.

Been doing it that way since 1999. I am good. Onc surgeon says he is no longer worried about me having carcinoid tumor or any cancer in my mesentary. And, does believe I have omental caking. He was up tight when we met in August, but as I've jumped through all the hoops and passed all the tests, scans, biopsies and follow up CT -- yay!!!

I will meet my oncologist who I saw in Dec and gave the surg's report to in June, after my next CT. Will get a same day report then. But follow up visit will have to include me explaining WORDS to my doc who is so so sensitive and insightful and brilliant and articulate.

He is generally excellent with words. He is gentle but to the point. Has a fabulous manner, knows when to be aggressive, when to pass a problem on to a surgeon, etc.

It was his nurse practioner who I met once and seemed very lovely and informed and spiritual who used that phrase on the script. My onc was I suppose defending her.

I need him to explain to her about the use of words and their impact on the patient. I understand she was thinking of the radiologist and the insurance company but the script was given to me, the patient and I actually read all the details (which is a new a quite lengthy piece of paper covering A through Z).

SHE doesn't get it. And she needs to be more aware.

Since I complained about the assistant in December and my onc defended her, I wasn't going to push. My fav onc and I have been together since 1995. I have only once complained to him about a staff member who was brusque and impertinent (nurse). So mostly I offer praise galore.

This can wait till June, when we meet face to face.

No worries here.

Now let's focus on YOU. May all go well, Juls.

And again, please let us know how you are doing.

Hugs,
A.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-18-2016, 07:02 AM   #34
Juls
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Re: Need input!

At hospital last Thursday & I got Zometa IV.
Questioned again about dental treatment before they would give me it.
Asked again for another bisphosphonate - no go!
Zometa their drug of choice!
5 days in and flu like symptoms.
Fed up!
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Old 02-18-2016, 06:09 PM   #35
MaineRottweilers
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Re: Need input!

I'm so sorry you feel so awful. Maybe it's time to look for someone who will listen to you. Can you go somewhere else?

As an aside, I haven't been able to take Zometa or Xgeva since Dec. My CA, PHOS & MG are still too low, in spite of supplementing and adding K2 to help with D3 absorption. How are you keeping your levels up?
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___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!

//
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Old 02-19-2016, 08:24 AM   #36
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 465
Re: Need input!

Hi Traci
Can't change team - will just keep mentioning Xgeva. On plus side flu symptoms better today!
Only had 1 IV of Zometa so far so don't have blood report yet. All my previous reports show low calcium and I have repeatedly told Nurses that I am concerned that this is not good in general and particularly with Zometa. They just offered Adcal to take (1200mg of C & 800 IU of Vit D a day) which in my opinion is too low particularly in Vit D. I am already taking 1000 IU of VIt D3 a day and have read that when you have cancer, dose should be much higher. Magnesium been ok as has phosphorus (its been quite high- wonder if there is a reason ?) have also read that Phos not good to take if bone cancer so maybe I'll just monitor that at the moment.
Zinc and selenium has come up in a lot of articles so wonder if worth looking at as well.
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Old 03-04-2016, 07:12 AM   #37
Juls
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Join Date: Mar 2014
Location: UK
Posts: 465
Re: Need input!

At hospital yesterday - After one of IV of Zometa 3 weeks ago - calcium dropped too low to have next infusion. I have been taking Calcium and Vit d.!! So now told to double it up! On plus side have dental treatment (filling) next week so don't have to worry about Zometa!

Traci - like you I am adding in Vit K . Also changing to Calcium Citrate as it is supposed to be easier absorbed. Have you got your levels up yet?
Juls
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Old 03-08-2016, 10:54 AM   #38
MaineRottweilers
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Join Date: May 2013
Posts: 524
Re: Need input!

I'll find out on Thursday. Fingers crossed.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!

//
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Old 03-08-2016, 04:03 PM   #39
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 465
Re: Need input!

Hi Traci
Hope level is up on Thursday!
Just had another lady e-mail me re zometa. She had it 3 wkly for a year and not once had problem with calcium. Still on it but at reduced dose. She didn't take calcium supplements at all - she binned them!!
Would love to know what I'm doing wrong or does it just suit some people better?
Take care
Juls
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Old 03-25-2016, 09:59 AM   #40
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 465
Re: Need input!

At hospital yesterday.
Did get 2nd Zometa.
Told Nurse that if Calcium not up - must be something wrong because I had been taking calcium, vitD, Vit K & mag every day! Fortunately it had come up to 2.34 (minimum scale level is 2.20) This is highest Calcium level I've had! Still to low end though!
Only problem was that liver markers (ALT,AST & Bilirubin) all up . Hopefully only because of Xeloda.
So one thing fixed and another appears.
Don't have symptoms of liver problems but still a bit concerned especially when Nurse tells me that I can't do anything to improve. Surely there must be something?

Anybody have this &/or suggestions?
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