Shelby4now: Hi ladies. I have found... - SHARE Metastatic ...

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Shelby4now

Shelby4now profile image
28 Replies

Hi ladies. I have found that this site has been very interesting lately. I thought I knew a lot about mbc but I know very little. I just received my pet scan results yesterday and it's not good. Xeloda stopped working and my bone cancer has progressed in multiple areas now ,too many to list. I'm going to start bravnav iv

Next week. My onc said no more oral chemo going forward. Has anyone been on this iv ? If you could I would love to know some history on this drug. I'm just sad today.

Take care. Stay safe God bless

Shelby

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Shelby4now
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Red71 profile image
Red71

Oh Shelby, I’m sad too. I get sad anytime someone has a bad scan report. You will work through it, I’m sure, because we all have strong cores, but sometimes we need a little time to process and mourn for what we wanted. I don’t know a thing about your upcoming treatment but I didn’t want you hanging out here alone tonight. Hugs, Elaine

Shelby4now profile image
Shelby4now in reply to Red71

Thanks Elaine. You said exactly what I needed to hear ... Accept.... Mourn ....adjust....I knew I was getting worse but did not want to accept . Thanks again tomorrow will be a better day .

Shelby

Kiera49 profile image
Kiera49

Hi Shelby I'm so sorry for you, we do need time for it to sink in then we have inner strength we didnt know we have

All the best sending hugs and prayers, take care, all the best. Sorry dont know anything about this drug

Shelby4now profile image
Shelby4now in reply to Kiera49

Thank you for responding ...woke up feeling positive again take care Shelby

The name of the drug is vinorelbine.

SeattleMom profile image
SeattleMom in reply to Shelby4now

Hi, Shelby,

I did some research on this med. Has your onc mentioned that this med is also available as an oral pill; equally effective to infusion.

Also, should be preceded by an anti-nausea pill to prevent that side effect.

Good luck and God bless you, sweet sister!

XXOO Linda

I understand your sadness. I was on Ibrance for two years but my last bone scan showed multiple new bone Mets so I started Chemo yesterday. Like you, it’s easier to say what bones aren’t affected than what are. I’m getting a different chemo drug. I was scare and sad and a whole lot of other emotions. I can tell you the chemo nurses at my hospital were amazing yesterday. So friendly and they really helped me relax. I hope someone else has had experience with themed you will be getting. It’s a shock to hear the word progression but we are hear to listen and support you.❤️ Sarah

Shelby4now profile image
Shelby4now in reply to

Hi Sarah

I have been reading your posts lately. I was waiting to hear how your first day went. I'm glad that it went well for you. I'm not worried about the iv process as I went thought that years ago . It's the 2nd bc that I can't get control of. I have not received a pet scan that has not reported progression so I do hope this chemo will work. The oncologist told me that if it doesn't work we could try a stronger one, but each time it gets more toxic. I guess that is where quality of life comes in.My original onc doctor has gone off on maturnity leave and my family doctor has taken time off due to covid Both will be back in October . I sure do miss them .God willing I will be here too. 🙏🏻Please💕 keep us informed on how you will be making out with your chemo shelby

in reply to Shelby4now

My heart hurts for you. My last couple of scans showed some progression but my oncologist wasn’t worried he said until the last one that showed a lot. I think we waited too long but this is my first time while he is the expert. It must be hard with doctors that you don’t know , this Covid has ruined so many lives in so many ways. I will be thinking of you and please stay in touch. I e done nothing but sleep today. It’s lunch time and I’m just awake enough to have some fruit and yogurt. Can’t keep my eyes open but that is likely normal. ❤️. Sarah

Shelby4now profile image
Shelby4now in reply to

Sarah

I promise I will keep in touch. Like they say all cancers are different but it seems to me

Ours seems very similiar. I'm glad you are resting today it gives your body the strength to keep fighting. Take care shelby

mariootsi profile image
mariootsi in reply to

Get some rest.

MacroMom profile image
MacroMom in reply to

Sarah, just want to share that I also get very sleepy for a few days after my infusion. It usually starts later the second day and lasts 2-3 days. Sleep when you feel like it, try to keep eating at least something whenever you can and, when you do feel a little energetic, don't try to do too much (like I always do!). It will pass. Thank you for keeping us updated!

in reply to MacroMom

Thank you for the advice. I’m sleeping as much as I can. ❤️

mariootsi profile image
mariootsi in reply to Shelby4now

I lost my onc too. It's very disconcerting .

Hi Shelby,

I am not familiar with this drug, but I just wanted you to know I am thinking of you and hoping that you cope well with chemotherapy. I hope that you have lots of support at home and from your medical team as you move forward with your new treatment. Let’s hope it works well for you and stops the cancer in its tracks.

Sophie

Shelby4now profile image
Shelby4now in reply to

Thanks Sophie

I sure hope it stops it in it tracks. The technical name for this drug is vinorelbine. I understand it's a palliative chemotherapy. My medical team won't be back until October so I'm just adjusting to their replacements. Take care shelby

in reply to Shelby4now

You're welcome, Shelby. Keep us posted on how you are getting on.

Sophie

Red1246 profile image
Red1246

Oh Shelby I’m so sad you’ve had bad news. I know nothing about your drug - still pray my oral meds will continue work - but wanted to respond to you.

I think we’re all stronger than we know and somehow we manage to get through the ups and downs of MBC fairly well.

Please try not to be too worried and give the new meds a chance.

Thinking of you and sending big virtual hugs. ❤️

Shelby4now profile image
Shelby4now in reply to Red1246

Thank you for your reply . C c. ,

8576 profile image
8576

Hello Shelby. Sorry about the scan results and all the new challenges you are facing. You probably thought of this but can you get more info on the drug from the pharmacist? I don't know anything about it. I am a couple of steps behind you in the meds list. Ibrance/Faslodex. It is all the more difficult dealing with a change in doctors. I had that happen also right at a bad time in my cancer journey.

Wishing you well with your new adjustments. Stay strong and safe,

Cheers, June S.

Shelby4now profile image
Shelby4now in reply to 8576

Thanks June

I did not think of talking to my pharmacist. Great idea I will go by and talk to him today.

Take care, be safe Shelby

geewisdom profile image
geewisdom

Shelby and Sarcie, your arms are never to short to box with MBC. We are in this together as we learn from one another. We mourn as one, pick yourself back up and keep truckin. MBC you will not win this battle and the battle is never over until God says its done. Until such time, we fight and we fight with everything we got. Keep smiling and keep your inner peace but never give up!

hdhonda profile image
hdhonda

Shelby,

I am so sad that Xeloda is no longer working for you and I pray the new drug will shrink the growth. The best to you. Blessings Hannah

mariootsi profile image
mariootsi

Shelby, so sorry to hear your news. I will pray for you as you proceed with your new treatment. I hope it kicks the damn cancer's butt!

Shelby4now profile image
Shelby4now in reply to mariootsi

You made me laugh I too hope it kicks the damn cancers butt

Take care stay safe shelby

SeattleMom profile image
SeattleMom

Hi, Shelby!

Sorry for change in protocol, but like so many of us "metavivors" feel so lucky that there are many options when one treatment stops working. Stay hopeful!

Sending many prayers for your well being throughout this new treatment! God bless you!!

XXOO

Jerseygirl45 profile image
Jerseygirl45

Hi Shelby,

Have not heard of your new chemo but will google it.

Just wanted to say my tumor markers have been going straight up since Jan 2018. You need to stay on for a few months to see if they bring markers. Two I had to stop because of bad side effects.

I am now on abraxane. My hair fell out completely on second treatment. I do have nausea an mouth sores and a few other side effects.

But the best part is my marker went Dow drastically in one month.🤗 one went from 4480.8 to 2200.2 the other went from 3809.2 to 1608.2. I am praying they keep going down.

I get upset when I get petscan showing progression all the time and like too many places to list all.this is the first hope I have had in two years.

But I am glad they have so many things to try. Like you I am finished with oral pills. I think if the markers get to remission they try to find a pill that keeps them down not sure.

So just hang in there we have to keep thinking the next treatment will work, it is what keeps us going.

Good luck on your new meds and I pray they work for you.

Shelby4now profile image
Shelby4now in reply to Jerseygirl45

Hi jerseygirl45

Thanks for responding I hope that your markers continue to go down and your next pet scan has even more positive results. I have never understood why some have high markers and some have low. I get my markers checked every month and mine started off at 25 and now they are at 32. My first bc was in 2009 my markers stayed at 20 . In 2016 my markers were 25. Keep us informed how you make out

Take care be safe shelby🙏🏻

Jerseygirl45 profile image
Jerseygirl45 in reply to Shelby4now

I know, some doctors don’t even check markers. But mine checks them all the time. Probably keeps us hoping.

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