Bad report 😞: I spoke with my... - SHARE Metastatic ...

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Bad report 😞

Sarcie
Sarcie

I spoke with my oncologist last night around supper. My bone scan showed progression within my bones with new Mets in my skull and to my face, my sternum, two ribs, numerous spots on my spine. Left hip and left femur. Apparently my ct scans did not pick up any of these which my oncologist thought they should have.

There are no other oral meds that are either available or allowed in Canada. Dr Ravi will do some research before our face to face appointment on Monday. All clinical trials have been closed due to Covid-19.

So, it’s chemo for me. My pain has been awful so I figured something was going on. Just didn’t expect that. I am worried about all the side effects from chemo as I tend to get every side effect going. I have calmed down some. It was so difficult to tell my husband, daughter and son this. I called my mother but my daughter texted my sister, niece and nephew.

I just wanted to share with the people that will understand how I’m feeling. My oncologist told me that my neutrophils have to be much higher than 1 to start chemo.

127 Replies
oldestnewest

I get it. Going thru similar situation. Did you talk to doc about boosting your wbcs with something like neupogen? It’s a small shot. You can learn to give it to yourself. After talking to my therapist, I am proactively working on my emotional well-being which plummeted with this news. I wake up to positive affirmations, doing a short easy yoga class, an activity that gives me pleasure (picking up floral handing basket and hung 2 bird feeders) and doing a meditation before bed. A lot of this seems obvious, but I am big on thinking and procrastinate on doing. We can do this. 💕

Sarcie
Sarcie
in reply to nstonerocks

We can do this ❤️

SusieIM
SusieIM
in reply to nstonerocks

YES! We can do this. Progression is scary same happened with me. But we must stay positive and do things like what you are doing Sarcie (smile).

hugs

nstonerocks
nstonerocks
in reply to SusieIM

I am limping along emotionally. If not for this board, my husband and a few good friends, I’d be climbing the Brooklyn Bridge. But what is the alternative. Beautiful Spring day here. Gonna live it!

Sarcie
Sarcie
in reply to SusieIM

Thank you ❤️

I’m so disappointed for you. You are such a good member of this board. I hate this blasted disease.

Thank you ❤️. Let’s hope a new treatment comes out while chemo is blasting the crap out of these nasty cells.

hdhonda
hdhonda
in reply to Sarcie

Oh, how I hope that happens. Progression is a scary road. I pray they come up with something to make you stable again. Blessings and hugs, Hannah

Sarcie
Sarcie
in reply to hdhonda

Thank you Hannah. ❤️

Sarcie - Your post gives us all pause. There are certain milestones that none of us are anxious to attain. Our thoughts and encouragement are with you as you and your onc determine the best course of action. Wishing you strength and peace, kc

Thank you. I will take all the strength I can get.

Hi there

How disappointing for you I’m so sorry

I’m concerned that the CT scan didn’t show this bone progression whereas the bone scan did

I’ve never had a bone scan only CTs so this is disconcerting...from what I’ve gleaned on here not many ladies have bone scans...were you annoyed this hasn’t been picked up earlier?

I wish you well with your chemo...hope it blasts those bastard cancer cells

What a life we all have

Love

Barb xx

Timtam56
Timtam56
in reply to Barbteeth

Just FYI, I have bone scans yearly and CT’s 3 monthly here in Melbourne Barb.

Barbteeth
Barbteeth
in reply to Timtam56

That’s interesting...I’m going to ask about this as I have mainly bone mets but lots of them

Barb xx

I have CT scans every 3 months and bone scans every 3-5 months . Canada 🇨🇦

Sunny2020
Sunny2020
in reply to Barbteeth

I have CT AND bone scans too

Sarcie
Sarcie
in reply to Barbteeth

I was upset that the ct scan (or the technician that was reading the scan) didn’t mention the progression. It certainly didn’t happen over night. Thanks Barb. I will picture those cells blowing up while I’m having chemo ❤️

nstonerocks
nstonerocks
in reply to Sarcie

Sarcie

Just so you know techs cannot give a diagnosis. At least one the US. Surely you will get regular bone scans from now on. I hadn’t had a pet scan in 5

Years. Shows cancer around my esophagus. Went thru all that radiation. Bet I have pet scans regularly now. Wish it didn’t take this set back. Best to you.

Sarcie
Sarcie
in reply to nstonerocks

I understand they don’t give a diagnosis, I meant the person they wrote the report on the scan. I had one PET scan which was to confirm my diagnosis. Since then it’s ct scans every three months and bone scans every 6. I hope he does the bone scans more often.

nstonerocks
nstonerocks
in reply to Sarcie

PS my fat fingers changed your name. Edited it. Sorry!

Sarcie
Sarcie
in reply to nstonerocks

Lol. I blame autocorrect

It’s Pretty much a standard of care that you have a bone scan and a CT every 3 months here in the States. They always go together

I’ve never had a bone scan

Barb xx

Here in Canada or at least in Nova Scotia it is ct scan every 3 months and bone scan every 6 months.

8576
8576
in reply to Sarcie

Yes. Same in Ontario.

Cheers, June S.

Barb5
Barb5
in reply to worldtravel75

Most of my cancer is in my bones for almost 7 years now and they never sent me for a bone scan just PET scan I’m going to ask for a bone scan I always thought I should have one but figured maybe Petscan shows the same. Thankyou for your post I’m definitely going to ask my doctor about as you know we really have to stay on top of things ourselves at times.

SMPG
SMPG
in reply to Barbteeth

The things with scans is that from what I know, PET-CT scans are the best. Also the most expensive. And insurances are reluctant to pay for it. Bone scans can pick up some things, CT scans other things. I am allergic to the contrast substance for CT scans and without contrast, there is no clear result. So, I requested a PET-CT and my oncologist agreed it was best. And my insurance denied it. Then, I really insisted, me and my doc both and finally, after a protracted struggle, it was approved. And I got some clear results. But why do we have to fight insurances when we have to fight this disease already? Anyway, I have always been a fighter. Now, since I do not take everything I am being told to do for granted, I just found out that I can continue to get my 75 mg Ibrance which, at least for me, is as good as higher strengths. I am glad about that.

Simona

Barbteeth
Barbteeth
in reply to SMPG

Thank you Simona

That’s good...I’m ok with the contrast for CT scans so I’m fortunate

Barb xx

Andersl
Andersl
in reply to SMPG

I'm allergic to the cat contrast too. So I have PET scans. Fortunately I'm in the uk so I don't have to pay x

You tell it, Barbteeth!

Barbteeth, I asked for the Bonescan, the CT only showed liver and spine mets. I had a bonescan 8 years ago, because it was standard with diagnosis at the Cancer Center I went to. Evidently the Bonescan showed more because only my chest and abdomen were looked at on the CT - the bone scan looks at the whole skeletal system. I am the type of person that wants to know exactly what I am facing. I research and study and that is how I feel more in control of the cancer, or anything in my life lol.

Sarah I'm so sorry to hear this. My heart goes out to you. I'm a glass half empty type of gal and a very big positive to take away from this is that it is still just affecting your bones. When I was diagnosed my bone mets were very extensive...almost everywhere and that pain was awful so I really feel for you. As a fellow Canadian I can also emphasize with the very limited options available under our health care systems. One drug though that might be an option for you and it should be covered in every province as it has been around for a long time and considered standard is capecitabine (xeloda) which is a chemo agent but in oral form. At least I would discuss the possibility of trying with your oncologist. Of course only they know your history but I just wanted to put it out there. You could also ask to change out your Letrozole for Exemestane....that is a different hormone inhibitor that might help. Likely you are like me health care coverage wise and Faslodex, Afinitor etc which are standard when Ibrance fails in the US is not covered for us and purchasing out of pocket is an expense we cannot afford.....so I'm trying to think outside the box of what we are covered for. Please know I am thinking of you and sending you a virtual hug. Please don't hesitate to pm me if you need someone to chat to. Take care.

Sandra

Sarcie
Sarcie
in reply to girlsptz

I will write those names down to take to my appointment on Monday. He did mention switching out the Letrozole but he feels it has progressed enough to drop the Ibrance completely. The chemo drug he mentioned (which I have forgotten) is available in N.S. but not other provinces. He said it’s usually the other way round and he likes this drug. I am going to mention all the drugs you have listed. I know some depend on the negative or positive signs that go with all those initials in my “type” of breast cancer. Thank you for the support ❤️

A lot of these drugs are not covered in the States -you have to apply for grants -Medicare will pay part of it if you are retired. It is covered on most commercial insurances if you are working. Unfortunately I got dx 1 month after retiring so I am constantly begging for grants. If not I pay an initial 4000.00 once a year then 800 per month for Ibrance. Faslodex is covered. I don’t have that kind of money so it’s very scary

It is sad that the US doesn’t cover drugs that are needed to live. Here in Canada the drugs are covered if you receive them in a hospital but not if you take them at home. We are certainly lucky that all hospital stays and doctors appointments are paid for. We just can’t win when our own bodies are attacking us and nobody wants to help us without getting paid.

my meds are covered fin the hospital but Ibrance is not covered because not a hospital drug like IV chemo -If I was poor I could get it covered through Phizer - If I had commercial insurance it would be covered but unfortunately I am retired and on Medicare and Phizer won't negotiate with government agencies in our country.

Oddly enough there’s some law saying they can’t. Ridiculous. Put people first, all you damn politicians and bureaucrats.

Hi, I'm in Medicare and called Pfizer myself. They send me my medication totally free. Medicare isn't involved with this transaction.

They told me that my income was too high

I dont need any private info but I'm assuming you have a very good pension. There are only me and my husband and we were told our income had to be no higher than 86,000 per year.

Problem is my income is too high for 1 person even though I don’t have much left at the end if each month -it’s too high for Pfizer

Sarcie
Sarcie
in reply to Selmac

That is awesome.

I make too much money for Pfizer even though I am retired And I don’t have much left at the end of each month but they just don’t care

I would still see if they have a financial person at your Oncologist dept. That person could appeal it for you. That happened to us because we were also over the amount allowed. Once they realized our medical expenses they changed their mind. Is there a way to send you a private message.

Thanks. I’m appealing but right now. Here’s hoping!!

Let me know.

They don’t look at what it costs a person each month to survive so they ? It’s sad.

I hate hearing your news. I completely understand. I always tell my friends that scan results are really good news or really bad news. I feel like there a lot more options out there for you. I must say that I’m tired of things being cancelled for this stupid virus. Trials should still be taking place. There’s certain things for us that should never be stopped. It’s such a crazy time.

Sending you lots of hugs and best wishes for your new plan of action.

:)Stacy

Sarcie
Sarcie
in reply to Staysha

Thank you Stacy. This Covid thing has stopped some things that could still take place, in my opinion. I’m hoping my doctor comes up with something new and wonderful before Monday.

mariootsi
mariootsi
in reply to Sarcie

I pray he will!

I am sorry you have progression in bones and I hope you can soon start on the chemo . I had neupogen shots for a week after my breast reduction op while on treatment , to boost my WBC’s , and my husband injected them for me at home ...I don’t know if these are available to you . Take care ! X

Sarcie
Sarcie
in reply to Teddielottie

I will see what he thinks. I know we talked about them before and he said they are really expensive. If it can help save our lives then it should be covered by the government. Thank you for your support.

Sarah.

I just can’t understand how this would feel. I have no words for you but, thank you for letting us know. It is through my dear acquaintances here that I have taken shelter, from fears, and faced many.....just like this, your news today.

Please keep venting here. And know that you are in my thoughts. I wish you well in your search for possibilities now.

Teaches me not to be complacent in doing the things I want to do NOW! And thank you for that lesson.

Chris

Down under! ❤️

Sarcie
Sarcie
in reply to Timtam56

Thank you Chris. It is wonderful to have this group to come to. My family is supportive but only you folks here actually know what I am feeling. I take a lot of strength from reading the comments. ❤️

I’m so sorry. I don’t even have words of comfort to offer but I came across this prayer and if you are a believer, it might help.

Lord Jesus, I find myself sometimes filled with depression and negativity over what I see as my failures in life; shame, guilt and anxiety beset me, and I grow sorrowful that I am not more, that I have wasted opportunities in my life. I sometimes feel worthless and helpless, with unwelcome humility forced upon me.

Help me sweet Jesus, to turn my eyes upon you. Give me the hope I need, and help me face life with the courage of faith in You.

You told your disciples to be anxious for nothing. I give to you my anxiety, Lord Christ, and lay my troubles upon your mighty back; and I pick up your burden, for you have promised that it is light, and that you are gentle and kind. Let me work for your glory and not my own, putting an end to the pain of my vanity, that I may serve You in joy and peace all my days. Amen

Sarcie
Sarcie
in reply to MyMiracle13

Thank you for the lovely prayer. I will write it down and carry it with me ❤️

MyMiracle13
MyMiracle13
in reply to Sarcie

You are most welcome. I hope the prayer gives you peace.

Yich. Like everyone else here I am sorry to hear you got this news. I understand that you believe there are no oral treatments for you now and you maybe offered chemo. My understanding from reading all this information on this blog is that there are different kinds of chemo these days and some are gentler than others. I am sure your doctor will come up with a plan. Ladies please jump in if you have comments on this about the different types of chemo out there. Your in our thoughts and we are all sounding positive vibes your way. Faith

Sarcie
Sarcie
in reply to Have-faith

Thank you Faith. I asked my doctor what happens after this specific chemo and he said if this one doesn’t work there are 4-5 other ones to try and new ones are found all the time.

I'm sorry Sarcie, this is such hard news to take. I'm glad you have a doctor who wants to take the time to research options. I want to share my story just in the hope that it give you hope too.

Four months ago I had similar news from a scan that suddenly showed lots of liver mets progression. I think my oncologist was in as much shock as I was; she even talked about the dangers of liver failure. And I got the news the morning of December 31st....heck of a way to start the new year.

It took a few weeks to figure things out but I ended up on the IV chemo Abraxane (similar to Taxol). It was my first IV chemo (I had taken oral Xeloda before). There was a time before cancer when I swore I'd never do chemo, but by February I couldn't wait to start. We all react differently but so far I've had an easy time with side effects and it seems to be really working on the cancer, at least according to my markers. I'm not in pain and, except for the hair loss, so far feeling pretty much like my old self.

Asking friends here for suggestions about drug options and avoiding side effects was a huge help....you may want to check in after you hear Dr. Ravi's suggestions to ask about others' experiences. There is so much hard-learned wisdom in this community.

Meanwhile, you have a few days to process, rest, be. I'll end with the quote that helped me most back in January.

No amount of anxiety changes the future.

No amount of regret changes the past.

Any amount of gratitude changes the present.

Wishing you peace through this next transition....

Patty

Sarcie
Sarcie
in reply to MacroMom

Thank you so much Patty ❤️. I have heard that chemo is not as bad as it used to be. I was pleased when Dr Ravi said that the chemo would lessen my pain as it has gotten out of control the last couple of months. I haven’t been able to do anything so I’m looking forward to less pain and feeling more human. I struggled with Ibrance as I was always so exhausted.

MacroMom
MacroMom
in reply to Sarcie

I understand the bone pain exhaustion, that's where I was at when I was first diagnosed with "innumerable bone metastases". But once I started on Letrozole and it worked the bone pain left and I really haven't had much in the 2 1/2 years since. I hope you get that kind of relief too!

By the way, Ibrance didn't work for me either, just tanked my white blood counts. I'm thrilled for the friends here who have been on it so long, but I have to say I don't miss the fatigue. I get it with chemo but so far just for a few days after the IV.

Regarding neutrophils, I was told they need to be at least 1.5 to get the taxane chemo I'm on. I still think that's low because they have dropped as low as 0.6 the week after, so I try to have them closer to 2.0 before the IV. I've been getting chemo 2 weeks in a row with 2 weeks off, but sometimes even after 2 weeks off the levels are still too low so I'm going to try 1 week on, 1 week off and see if that helps. There seems to be a lot of flexibility in scheduling and dosage.

Take care!

Patty

Sarcie
Sarcie
in reply to MacroMom

Ibrance was always a problem for me. My neutrophils dripped as low as 0.3. I was always off it for three weeks each cycle. Looking back I don’t think it ever really worked for me. My doctor said my chemo would be once a month but I can’t remember what it’s name is. I will write it sien Monday when we meet.

Sarah, very hard news to get and try to digest. Know that we all know exactly how you are feeling and are sending you all the positivity possible 🇨🇦❤️🥰. Only look to the near future as looking to far ahead can be scary at times when we don’t know what will happen. You can do this, you have the right attitude, a fighting one and that’s so important.

Sending you positive vibes and prayers. Stay strong 💪

Susie

Sarcie
Sarcie
in reply to Onie54

Thank you Susie ❤️ I am trying to stay positive and I realize that there are others that have it worse. One day at a time.

I’m so sorry. I am glad there are 4 or 5 more treatments out there even if they are chemo treatments rather than the ones you want. Hopefully this next treatment will work until this blasted Covid stuff fades and we can go back to trials and experimental treatments. Of course, the worst part is not know how you will respond. I hate the time in between getting news and starting new treatments. It makes me slightly crazy!

If the chemo takes away your pain, decreases your lesions, and doesn’t give you too many side effects, then you will probably be pleased that it was the direction you had to take. I’ll send lots of prayers and good vibes that this treatment will be a glass half full or fuller!

Elaine

Sarcie
Sarcie
in reply to Red71

Thank you Elaine. I’m hoping for good results from Chemo. A lady told me she was tired for the first couple of days and then they went away. That I. Itself would be a big change for me. I’m most nervous about nausea.

Dear Sarcie, sadly I’m in the same place and completely get your pain and confusion. I had a terrible PET scan after feeling increasing pain. Lots of completely new Mets in bones, right arm, spine, liver etc. I’m in the U.K. and we too have many restrictions on treatment regimes. I had been on Faslodox and Ibrance, although we agreed to suspend Ibrance during the covid emergency: Big mistake! In the subsequent three months my cancer went on walkabout.

I had a very frank discussion with my Onc and she was clear that without Chemo I would have a very short survival time.

I reached out to this wonderful community and received amazing support and advice.

In short, my treatment plan agreed is;

-Abraxane (Nab-pablotaxel) by infusion every three weeks- the three week schedule was to allow time for GCSF support

-24 hours after chemo, GCSF shot ( white cell booster) to help prevent infection.

-Rescan PET after three cycles of Abraxane with up to six cycles if being effective

-The lovely ladies here suggested using cool packs to chill hands and feet during infusions to help prevent peripheral neuropathy.

-5 days post treatment with glucosamine ( protein powder with green juicing)

-Vitamin B6,12

- I decided to try cold cap to preserve hair( I did it with success last time) not at all comfortable but I find it manageable with a bit of meditation.

I had my first chemo yesterday which I have to say was very easy. I know we all react differently but I have been fine so far ( only 24 hours) I’m due to give myself the immunity support shot in to my belly later today. I did this during my last chemo and it’s honestly so easy and no more than a little scratch. So far this feels very different to my chemo in 2016, early days but I try to keep positive.

I hope my very limited experience may be of some comfort and help. Others are far more experienced and offer amazing support for both body and soul.

Sarcie
Sarcie
in reply to Nooze

Thank you so very much for sharing. This helps me relax a lot about chemo. I am going to write down what you do to share with my oncologist. Any extra advice is a big help especially when this is my first time with chemo. I’m sorry you are going through the same thing. I have never been able to take Ibrance properly. It always dropped my neutrophils so low I was off it for three weeks each cycle. I also was off it a month while having hip replacement surgery. The last few months I have been taking it one week on and one week off. My neutrophils stayed up and I was feeling ok but then the last cycle my neutrophils dropped and didn’t want to cine back up. Then I had my scans and I understand why my body was fighting so hard. Please let me know how you are doing if you are ok with sharing. All the best and healing wishes sent to you.

Nooze
Nooze
in reply to Sarcie

I’m so happy to share particularly if it helps someone else. We all respond differently to drugs so I can only share my experience and we all must trust our Oncs to give us targeted advice. Today went well and my injection was super easy: I felt quite proud of myself. Good luck with your appointment, stay strong and in control. Xx

MacroMom
MacroMom
in reply to Nooze

So glad to hear that your first Abraxane treatment when so well. You did a good job of being prepared for it! I'm going in today and will try my homemade "ice socks" for the first time. You are a trooper using a cold cap. Brrrrrr! I'm pretty used to not having hair now, just need to get a hair clipper to get rid of the darn stray gray hairs that make me look like an ostrich!

Nooze
Nooze
in reply to MacroMom

I have to thank you for all the tips and confidence you gave me to face the first one. My chill socks did get a few giggles but they were a great addition. My thoughts will be with you tomorrow and hope for a continued good response. Do you mind me asking how many treatments you are likely to have? My Onc is saying up to six but I don’t know if that’s to start.

MacroMom
MacroMom
in reply to Nooze

I just had my 7th treatment today. My oncologist hopes I can stay on it for a long time...she has one patient who's been on it four years! The goal is to keep the dose at a level where the side effects are livable and it's keeping the cancer, especially liver mets, under control. She said that might mean going down to 1 treatment every three weeks at some point. Maybe your oncologist wants you to have 6 treatments then check labs or do a scan. My CA15-3 didn't drop immediately but it dropped a lot after 4 treatments and so far is staying down. "Down" is 132, but that's a big improvement over 318 in February. So much is relative in this world!

My little ice packs had melted a little by the time the Abraxane was mixed today so I don't think I got the full icy effect. Holding frozen water bottles chilled my hands down pretty quickly though! Next time I'm going to add another ice pack to my little cooler to keep it all colder.

Nooze
Nooze
in reply to MacroMom

I’m so thrilled to hear you are having a good response and a patient surviving four year is way beyond what I was hoping and praying for. It’s so good to have hope! Thank you for sharing xx

I’m praying for u and sending positive vibes your way...don’t give up the fight 💕

Hi , Sarcee So sorry to hear your news. Do you take Denosumab.my surgeon said I would be a brace by now and unable to walk. But my oncologist has been great and the mix of Denosumab,Avastin, and Xeloda has almost removed my spine mets. Do you get full body MRI’s over there. Hang on in there I know you will get sorted xx

I have been asking for a bone strengthener for a year but my oncologist said it was for my family doctor to decide and she said the opposite so I have gone without. I will be asking him on Monday. I’m tired of being tossed around by doctors. Thank you for the support.

wow - that is a standard of care!

Barbteeth
Barbteeth
in reply to Sarcie

I would insist on having denosumab

Even tell your GP you’re on this board and everyone is having monthly denosumab injections

You’re entitled to them...be pushy

Barb xx

Sarcie
Sarcie
in reply to Barbteeth

I’m going to be very pushy on Monday. No more going along with what they say.

Barbteeth
Barbteeth
in reply to Sarcie

Good....get the treatment you need and deserve

Barb xx

Sarcie, I am so sorry to hear that additional Mets have been found on your scans. I understand the emotional pain of telling those you love that the cancer you fought has returned. Then there is the sorting of your own feelings about the situation. I think all of us go through that process in some way.

When I was first diagnosed, my oncologist felt that I was a stage 2 after looking at my mammogram. She then decided to ask for a PET scan. The scan showed places on my spine and right hip. My insurance at that time paid for my PET scan. However, I had to get Medicaid after my unplanned retirement, and Medicaid does not pay for PET scans. I believe everyone diagnosed with cancer should have access to that scan. Asking for one when you finish chemo is a good idea. Requesting your doctor advocate for you with your insurance if necessary is also important. CT scans do not show everything.

I do not blame you for wanting to avoid chemo. It is rough on your body. That being said, chemo has extended my life well beyond what the doctors initially anticipated. I have had chemo more than once, and I find that every patient 's response is unique. Ask your doctor what drugs she will prescribe for chemo. Check out the possible side effects of those. It might help you to know what to prepare for ahead of time.

I wish you all the best, Sarcie.

I am sending prayers & positivity as well as love & light your way.

Sarcie
Sarcie
in reply to NiNi4

Thank you ❤️. It is nice to have those that understand although I wish none of you were in the same situation.

I have ct scans every 3 months and bone scans every 6 months. I had a PET scan in the beginning to see exactly where was affected. I am wondering about the MRI also as I am second guessing what the ct scan is or isn’t seeing.

I’m in Canada so I’m lucky to not have to worry about the cost of anything. But with Covid and then trying to keep the hospital beds open for those patients they have cut back on other things. I have been lucky though and all my scans were dine promptly.

It’s all such a roller coaster and we never know what each day will bring. Again thank you.

NiNi4
NiNi4
in reply to Sarcie

You are welcome 🙂

So very sorry to hear your news Scarcie. I haven't anything to add to the answer you have already received. I think I am in the same position as you. CT and Bone Scan showed some progression in February. Maybe that was because of having my left breast removed because of tumor growth. In any case, I am having both scans again tomorrow. (May 1st). My understanding is I would progress to Xeloda if there is progression again. I gave up on Ibrance/Faslodex because of the expense. I am so frustrated that I can't have Ibrance/Letrozole combo as it is covered in Ontario.

In any case, wishing you the best. I am sure your oncologist will come up with something that will help. Keep your chin up.

Cheers, June S.

Thatflowerlady
Thatflowerlady
in reply to 8576

HiJune , maybe try asking at your cancer clinic if there is a compassionate program to help with the cost of the ibrance , I think it might even be Pfizer the manufacturer that will help with the cost .

Faslodex isn’t/ wasn’t covered in Ontario as of a month ago , good luck I thought it might be worth a try .

8576
8576
in reply to Thatflowerlady

Oh thanks. We have tried every avenue we know of and $852.00 per month is already a discounted price. It is normally close to $1400 for Faslodex and Ibrance is close to $2000. They forgave the Ibrance cost as long as I was paying for the Foslodex. So in other words they as long as they were getting paid for one.

I am not sure about other supplements. The person that looks after applying for supplements says there is no other help.

8576
8576
in reply to 8576

Sorry, forgot to sign previous post. It is June S.

mariootsi
mariootsi
in reply to 8576

June, good luck with your scans tomorrow. I pray for good results!

Sarcie
Sarcie
in reply to 8576

Thank you for your support ❤️. Good luck with your scans, I’m sending you good wishes. My last bone scan which was 4 months ago so a couple of small spots that weren’t there before but my oncologist wasn’t worried about them. I hindsight I wish he had been more proactive.

Why wouldn’t they give you the Ibrance/Letrozole combo? In Nova Scotia Ibrance is not covered but I am lucky and my husband kept his insurance when he retired from the Navy plus he has insurance at his new job so mine is covered. My doctor said that he could ask the province to cover it but it took time and a lot of letters. I would certainly ask again.

If you want to, please let me know how your scans go.

Sarcie
Sarcie
in reply to 8576

Thank you June.

Sounds like you are being yourself, have taken the news in your stride, and getting ready for your next battle. You go girl. You know we are all thinking of you and willing you on.

Clare xx

Sarcie
Sarcie
in reply to BellaE

Thank you Clare. After a brief crying jag I decided I can’t change anything so try and be happy which will in turn ease the stress for my husband and kids. ❤️

8576
8576
in reply to Sarcie

Right on Sarah. That's so good. Glad to hear you are "sitting upright" again! I made that up, don't know from where, Sometimes my brain scares me. (Just kidding)

There is some rule from Phizer that they only cover the combo of Let/Ibrance as a first line of treatment or something like that.

Cheers, June S.

Sarcie
Sarcie
in reply to 8576

I understand. I swear my brain stops working some days. Lol.

This damn monster that lives inside us. I'm so sorry Sarah. I hope you have a good discussion with your onc and develop a plan you feel confident in. All we can do is keep walking. Just know you have an army of us walking with you. You have helped so many, including me. Let us carry you for a moment. With just a touch of luck, you will feel better soon.

Much love, Andi

Sarcie
Sarcie
in reply to Arisgram

Andi, your words mean so much and put a smile on my face. This is an army that I am proud to stand with (although I would rather we were all at a beautiful resort being spoiled ).

So ver sorry to hear this Sarcie. Praying for strength as you start a new treatment and that it may be successful. I have a ct scan and bone scan for my spine Mets. Hopefully you will be able to have that too.

Thinking of you💕

Theresa

Sarcie
Sarcie
in reply to Totheriver

Thank you Theresa ❤️

Sarcie—

You are in my heart and prayers as you begin a new regimen. I pray that your new treatment will zap the spread but allow you to tolerate the side effects. Sometimes I think the anxiety and the daily reminders are worse than the treatment. I can’t remember now when I first wrapped my head around the fact that my life had changed forever. That hurdle was the highest.

Just before I get results of every blood draw, I say a prayer to God. I don’t ask for good news, just that I can stay calm if it’s not so great.

None of us can change the progression of this disease, but we can accept that there will be forks in the road. I hope that this new treatment is successful and that you find a way through the anxiety. God bless you, Sarcie!

Linda XXOO

Sarcie
Sarcie
in reply to SeattleMom

Thank you Linda. ❤️. My anxiety is easing as I sit here and read all of the comments in this forum. I take strength from each comment and I feel ready to meet this head on.

Sandra , I’m so sorry to hear of your increased pain and subsequent scan confirming the reason behind it. I feel helpless as I have no idea what to suggest as my journey has been so short thus far. I’ve appreciated your posts and support. Reading through all the posts I see such a diversity in approaches and access to care. Being in the middle of a pandemic and loss of economic support worldwide is frightening. Fractured cancer care enhanced further by this global crisis is horrific.

Yet I do feel a sense of belonging here. I trust all the voices here. . No one could ever truly understand that fleeting feeling where cancer is not in your mind and then in just another moment we are all acutely aware of this life sentence we are all facing for no crimes committed to justify the torture and punishment.

I send love and hugs to you .. and to all in attendance here.

May you win this battle ❤️

Respectfully submitted , Patricia

Sarcie
Sarcie
in reply to LotusAFlower

Patricia, your words are greatly appreciated. This forum will give you amazing support and is a fountain of knowledge. Each person is on a similar path but we all have a few different twists and turns. All we can do is to remember to stop and enjoy the view along the way.

LotusAFlower
LotusAFlower
in reply to Sarcie

Thank you for your kind and supporting words. I am forever grateful

So sorry to hear your news! We are here for you! Damn cancer!

Sending love,

Marianne

Sarcie
Sarcie
in reply to mariootsi

Thank you Marianne ❤️

Hi from Ontario! I too am stage 4, bone Mets everywhere, but I don’t have much pain. In a few places I have had Rad’n from time to time to “shoot that pain spot”- is- hip, back of neck.

I am on Ibrance and Falvestrant and have not paid any money for it. There was a lot of scrambling in the beginning to get me covered but I believe my pharmacist in the CC worked with Pfizer. I spent a lot of time on phone between them, pharmacy and Trillium Health, who provide extra$ coverage. Obviously they came up w something as I’ve had no bill$$.

It is easy enough to take but drives my WBCs down0.7 yesterday, so we are going to 3 wks on, 2 wks off. I have liver mets too, since Jan, gave me 3-6 mths but I’m feeling just fine and staring down The Bear... will prove him wrong.

All this to say, ask the Dr and the pharmacist to do some digging and get you coverage. I think you’re in NS and hope they have a extra coverage bank acct like Ontario’s Trillium Benefits to help you out. As well if I’m right about being in N.S., my heart goes out to you after last w/e horrid crimes. Blessings of healing and support for you💕💕

Sarcie
Sarcie
in reply to Quiltersue

I have been lucky so fast as my husband has two health insurances. One from his retirement from the Navy and one from his new job. We are blessed to live in Canada where there is no cost for all the tests and doctors.

It has certainly been a rough month here in NS between Covid and being scared to go out anywhere and get sick and then the god awful shooting which ripped my heart out. The shooter was caught about 5 minutes from my home. It was terrifying to know he drive through my community.

8576
8576
in reply to Quiltersue

Thanks for the info. I will ask again about coverage. Might depend on finances. Although my husband is on a CPP turned over from Disability at 65 otherwise we would be in dire straits. I stayed home with our 3 children and then worked only occasionally outside the home.

Cheers, June S.

Sarcee push your oncologist for Denosumab it has done wonders for me and is not hard to tolerate. Push push you owe it to yourself. Good luck forMonday x

Thank you. I will add this to my list which I am giving him and we will go through every subject until I get the answers I need. I was so frustrated with the two doctors. At one point I said “can’t you two speak to each other or email each other. It’s hard being the go between”. Even that didn’t help. I’ve tried to be my own advocate but it seems I will have to stop being nice and start kicking some butts 😉

You go girl and kick some ass x

8576
8576
in reply to Sarcie

Oh my. Sounds so much like my oncology unit. Not enough communication. They are all over worked. The number of patients each doctor has in one day is crazy. They only work 5 days here.

We just have to keep standing up for ourselves.

Cheers, June S.

Sarcie
Sarcie
in reply to 8576

It is scary June that the department that deals with only life threatening issues is so short staffed.

So Sorry for this news. I hope they can find some treatment for you that will help. I’m praying for you Sarcie and please let me know what your Onc says . Hang in there and try to be positive-hope you are not hurting .🙏🌹

He said which chemo drug he will be using but I forgot the name. I will write it all down on Monday when I see him. Thank you for your support ❤️

Yes let me know sarcie about which drug he will use-Hang in there!🙏❤️

So sorry to hear Sarcie. It appears that we're in the same boat. My bone scan indicated progression in spine and ribs. I'm having a phone conference with my radiation oncologist on Tuesday and have no idea what the recommendations will be.

Sarcie
Sarcie
in reply to Teeco

I’m sorry to hear this. I hope your radiation oncologist is getting on-board. What has your medical oncologist suggested? Please let me know how you make out on Tuesday.

Teeco
Teeco
in reply to Sarcie

Thank you. I must admit that I need to check my internet more often.

This is really tough news. My thoughts are with you and your team as you decide on the next steps.

Sorry to hear and understand how you must be feeling it’s the news we all dread but you may have much luck on chemo and even feel better keep positive thoughts as much as possible and when not possible I say have yourself a good cry sometime it helps to get it out. Thoughts and prayers are with you.

I’m sorry you are going through this now. I hope they find just the right combo to nail this blasted disease we all struggle with. I had a bone scan with initial diagnosis but not since. Hang in there and know you have us all rooting for you. ❤️

Sarcie
Sarcie
in reply to Tam-56

❤️

I am so sorry to hear your news. If u r BRCA positive then the PARP inhibitors are an oral chemo agent. Also you may want to ask your doctor or a neurologist about prophylactic seizure meds due to the location in the skull. There is an online seminar called Radical remission that looks very interesting. I think it is full but there is a waiting list and an online course available you can take at any time as well as a book available on Amazon. All my prayers go out to you that you have a speedy recovery.

Sarcie
Sarcie
in reply to JIFF1

I don’t think I have been tested for anything. I will look at the seminar. Thank you for your support. ❤️

Sarcie

Hugs prayers to you as you go into the next battle with this bastard cancer🙏🏻🙏🏻🙏🏻♥️♥️♥️♥️♥️

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