Dust and mammograms

[princesss]

Oh, VL, tons of thoughts and prayers going out to you guys as you figure out how to proceed. I hope she's able to tolerate the radiation and chemo. *hugs*

 

[Winks_Elf]

I am so sorry to hear this. (((((hugs)))))

My aunt is battling breast cancer, and just when they thought they got it all, she had a mastectomy, radiation, etc., she is now having back pain. I suspect the cancer is not only back but spreading.

I will be saying prayers of peace, comfort and strength for both of you.

 

[Aoife]

VL, sending you and your partner much dust, and healing thoughts.

 

[Autumnovember]

Continuing to think of both of you...

 

[Izzy03]

Praying for you and your loved one.....

 

[manderz]

Thinking of both of you. So sorry that you and your partner have to go through this.

 

[VapidLapid]

So far radiation treatment has turned out to be a very painful experience. Lots of throwing up. Today that happened in our elevator. Fortunately I had taken plastic shopping bags with us for just such an eventuality. Were we mistaken to believe as we were told that the radiation would help immediately with the pain? With all the throwing up she couldnt keep the pain meds down so last evening there were no pain meds in her and wow, it was like the soundtrack of Guantanamo. Still we move forward through the murkiness. Tomorrow I am going to ask if there is a pain med she can get in a patch so that she doesn't lose it in the sickness. Thank you for keeping us in your thoughts. Isnt it odd and sweet that the kind thoughts of people we don't really know are important to us, and can be a boon to us in tough times?

 

[junebug17]

VL, I'm so sorry your SO is having such a terrible time. I don't know much about this, but I would ask if there is something that can be done to combat her nausea. From what I understand there are medications that can help. And I think it's a good idea to inquire about alternative ways to relieve her pain as well. I hope something can be done to relieve her suffering, my heart goes out to her. And to you too - I can only imagine how hard it is for you to see her go though this.

 

[Arcadian]

VL, I'm so sorry to hear this. Both of you have plenty of healing dust coming your way from me.

Can only tell you from my personal experience what worked for me. Mine was not as progressive as you're partners and different location(s) , but I did have to go through chem/radiation/operation.

Ask her doc about suppositories for the nausea. I was given suppositories during my treatments as it was the one way I would not throw the meds up. They weren't 100 percent though they helped to lessen the bouts of throwing up. You can try ginger tea in conjunction. The tabs didn't work that well for me, the tea though was 50/50.

For pain I didn't have a whole heck of a lot of options. There's the one I can't talk about which was herbal, and the few that I can, though it was trial and error for me because of my drug allergies. Patches weren't an option for me, I can't tolerate the adhesives they use I don't know how consistent those are either, so unable to help there.

If they haven't spoke to you about anemia, bring it up to the oncologist.

You maybe could look into acupuncture. Her Onc may be open to it as a means of relaxation from the stress of all of this. On my 2nd bout it helped me a lot. Can also help with pain too. Its all worth a shot in any case. but I would pass the ideas through her treating doc.

Both of you will continue to be in my prayers.

-A

 

[iLander]

Ugh! I had hoped the radiation would turn out a little better than this, I'm sorry it's giving her a hard time. The only bright side is that it is making some progress and getting rid of the nasty spots, and it IS making her better, even though I know it doesn't feel like it. Bad stuff is being taken care of, so good stuff is totally happening. Hard to keep in mind right now, but it is the truth.

I think the pain patch is an excellent idea. Genius. Ask for that.

A couple of my relatives have used a morphine pump and gotten a lot of relief. Interestingly, studies have shown that patients use less morphine with the pump than they would with a prescription. It does make the patient pretty loopy, though, so maybe for night use?

I had a friend with colin cancer (fully recovered and just fine, five years later) who had a form of chemo that was a pill. It's odd, but she stayed at home and took that and it worked. Ask the doctors all kinds of questions, they have stuff up their sleeve.

My aunt had breast cancer, she's doing just fine after chemo and radiation. She said the worse part was the breast reconstruction afterward, that was a weird pain. Apparently, strippers are a lot tougher than we all realized! (trying to joke and cheer you )I think I would just skip that nonsense, if it were me.

It is odd how well a forum works, isn't it? It really does help to know people care, even if you can't see them. I know it's been a real help to me.

Please keep us all informed, I kind of worry for you guys, and I've got my fingers crossed.

Dust, dust!!

 

[Novel]

Oh, VL, I'm so sorry to hear this. Sending lots of healing thoughts and hope for less pain to you and your partner...

 

[iLander]

Hi Vapid,

Checking to see if you got those pain patches, hope they're working well for her.

Some days are better than others, but you're making progress, just keep that in mind.

Dust and hugs to you both.

 

[Aoife]

VL, I'm so sorry that your partner is having such a terrible time. I've been thinking about you both so much for the last couple of days. I totally second Arcadian's suggestion for the suppositories. They worked (at least partially) for my mother when nothing else would stay down. Also, don't accept "no" for an answer from her doctors: she has a right to have her nausea and pain attended to, and there are options out there that can be tried. Sometimes it's important to have an advocate who can deal with all that stuff--that would be you--and be persistent.

I'm holding both of you in my thoughts, and sending many peaceful and healing thoughts in your direction.

And don't forget to take care of yourself, too.

 

[D&T]

VL- I'm sorry you are going through this, and I'm sending lots of dust, prayers and good vibes your way for both of you.

 

[VapidLapid]

You are all so very generous with your thoughts and your dustbins! Today we did not see the Dr. as I had hoped. This was the third day of radiation and, while there was some throwing up, not too bad. More importantly she is having less pain and more freedom of movement. Also through all that there were a few glimmers of optimism! I know we are not out of the woods yet, not by a long shot, but it seems like a real possibility today. Next week starts the chemo, which is going to be interesting. The cancer is estrogen+ so they are going to treat her with a hormone. They are also pushing us to submit to a clinical trial of avastin in combination with the chemo. I would be very interested to hear your thoughts is any of you have first, second, third hand experience with this or even just heresay (which is what I call the news media). I love the idea of avastin, something that blocks the cancer cells from hijacking the body into growing new veins dedicated to the cancer. The studies I've read show that it really succeeds, but that it does not result in longer life. Side effects are quite alarming with internal holes (as they called them, sounded like ulcers to me) . Leaves me wondering if the side effects are the reason for there being no extension of life. We will see the oncologist again monday and discuss then the avastin. I want to kow if the Dr has reasons to think avastin will perform differently as a combination therapy, and whether they have a better plan for subverting the side effects. Meanwhile she kept dinner down! I made a home made mushroom barley soup, a non acid fruit salad, and rice pudding. The dog is starting to look a little stressed now too. I think we will all sleep tonight.
Thanks for the PS dust!!

 

[susimoo]

Thinking about you both!! Will continue to send positive vibes from across the pond! Dust dust dust!!!

 

[rosetta]

Very sorry to hear all this VL

What is the name of the Avastin trial?

Which country do you live in?

Is the nausea now under control?

My field is oncology. Perhaps I can help.

 

[iLander]

Hi Vapid

Yay, optimism! Yay, keeping food down! Thank god for sleeping, huh? Amazing how much you miss it when it's hard to get. Poor doggie, a little cube of cheese will brighten him up.

I am glad things are looking up, hope today went well too.

DUST, dust, dust!

 

[Aoife]

I'm hoping today the pain, nausea and other symptoms continued to improve.

Sending dust, dust, and more dust your way.

 

[iLander]

Checking in, Vapid.

Hope everything's going well, dust your way . . .

 

[chemgirl]

Sending lots of prayers and wishes your way.

My mom had breast cancer when I was a kid and I remember the treatment being rough, not only on her, but the entire family (she recovered, its been 19 years and she's still cancer free). She was exhausted, couldn't keep anything down, was having huge memory gaps, and a very short temper. I understand that this is par for the course. The good news is that it seemed to go in cycles (corresponding with treatment changes) and the treatment did help with the pain. This went on for years and I remember thinking that my mom had multiple personalities. It felt like that sometimes because the person undergoing treatment can be happy and optimistic when they're having a good day, but horribly depressed, angry, and unreasonable on a bad day. My husband was totally shocked to hear about some of the horrible things she said to me during bad days. She's the sweetest person ever, but this disease and the treatment can completely change a person. As much as you partner needs your love and support right now, please make sure to take care of yourself so you can be there for her. The treatment is going to be really tough on both of you, but the good days make it all worth it.

 

[VapidLapid]

You folks are incredible. Thanks for helping to keep us going. Thing seem to be getting better; less pain and more eating, keeping food down, and energy. I am anticipating that may change when the chemo starts tomorrow, but Im prepared. We've gotten this far, and there's no way but forward. chemgirl, I am so sorry to hear about your mom. The treatments may have changed a bit since then but your description of the good days/bad days and temper issues are right on. I try not to respond to the nasty side. She gets frustrated with waiting and once something bugs her she harps on it making it worse, so I have been trying to head those moments off. When I see them coming, I discuss calmly and quickly the issue and suggest we should just focus on breathing for the moment since that is really the only thing we have to do that day.
Rosetta how awesome that you work in oncology. That must be tough on a daily basis. I totally admire you. We live in New York City. The name of the trial is
"Full Title

Endocrine Therapy in Combination with Anti-VEGF Therapy: A Randomized, Double-Blind, Placebo-Controlled Phase III Trial of Endocrine Therapy Alone or Endocrine Therapy plus Bevacizumab (NSC 704865; IND 7921) for Women with Hormone Receptor-Positive Advanced Breast Cancer (CALGB 40503) [Protocol 08-102]"
I am concerned that the fda un approved avastin for breast cancer treatment because while it did inhibit angiogenesis, it did not extend life and the side effects compromised quality of life. I think the side effects could be the reason that there was no extension of life. I wonder then if the drug, while blocking the formation of new vessels to the cancer, might also have had a bad effect on the maintenance of healthy tissues. Also wonder if the mechanism of either or both effects is known, and if so has there been any change to the drug or its administration to compensate. ie: some buffer to minimize the side effects? Otherwise I would expect that the combination of avastin with the aromatease will have the same side effects and result
I wish I knew what to do there. Her Dr is the Principle Investigator. I also worry that being double blind and placebo controlled we wont know IF she is getting the avastin or not,

 

[Autumnovember]

You folks are incredible. Thanks for helping to keep us going. Thing seem to be getting better; less pain and more eating, keeping food down, and energy. I am anticipating that may change when the chemo starts tomorrow, but Im prepared. We've gotten this far, and there's no way but forward. chemgirl, I am so sorry to hear about your mom. The treatments may have changed a bit since then but your description of the good days/bad days and temper issues are right on. I try not to respond to the nasty side. She gets frustrated with waiting and once something bugs her she harps on it making it worse, so I have been trying to head those moments off. When I see them coming, I discuss calmly and quickly the issue and suggest we should just focus on breathing for the moment since that is really the only thing we have to do that day.
Rosetta how awesome that you work in oncology. That must be tough on a daily basis. I totally admire you. We live in New York City. The name of the trial is
"Full Title

Endocrine Therapy in Combination with Anti-VEGF Therapy: A Randomized, Double-Blind, Placebo-Controlled Phase III Trial of Endocrine Therapy Alone or Endocrine Therapy plus Bevacizumab (NSC 704865; IND 7921) for Women with Hormone Receptor-Positive Advanced Breast Cancer (CALGB 40503) [Protocol 08-102]"
I am concerned that the fda un approved avastin for breast cancer treatment because while it did inhibit angiogenesis, it did not extend life and the side effects compromised quality of life. I think the side effects could be the reason that there was no extension of life. I wonder then if the drug, while blocking the formation of new vessels to the cancer, might also have had a bad effect on the maintenance of healthy tissues. Also wonder if the mechanism of either or both effects is known, and if so has there been any change to the drug or its administration to compensate. ie: some buffer to minimize the side effects? Otherwise I would expect that the combination of avastin with the aromatease will have the same side effects and result
I wish I knew what to do there. Her Dr is the Principle Investigator. I also worry that being double blind and placebo controlled we wont know IF she is getting the avastin or not,

Vapid, I wish I could say something but to be completely honest I don't even know *what* to say when it comes to things like this. When my dad was suffering from his cancer last June, it felt like my whole world had come crashing down. I had never seen my dad like that. Never saw fear in his eyes until then. I never even heard my dad admit to being scared of anything. He was never vulnerable. It changed everything for me. He is better now but he went through hell and back before he got to the point that he is at now. All I did every single day was try to stay strong for him, myself, and the rest of my family. I prayed....hard. I just want you to know that each night before I go to bed, I am praying for you guys too. Just like I'm praying for my dad to continue on his road of recovery, and also for my best friends mom who is battling cancer now too. You guys won't leave my thoughts.

 

[Aoife]

Thinking about both you and your partner today, VL. I hope the chemo does what it's supposed to do without making her too sick, and I'm sending healing thoughts and wishes for strength your way.

 

[VapidLapid]

Thanks all for your concern, good thoughts and dust. Another long day there at the Cancer Center. we met with the oncologist again and the treatment starts tonight. Not really "chemo", rather it is a hormone, letrozole. Since this cancer is estrogen receptor positive, my understanding is that the letrozole molecule will bind to the estrogen receptors on the cancer cells thus blocking them from their power source, estrogen. I had that filled right when we got home. We have insurance and our co-pay is usually $10. This was 110 co-pay for the generic! that's for one month. And the avastin they want her to do the clinical trial for costs 35k a year!! If she decides to do that I imagine it would be free since its a clinical trial, but who knows? After the Onco there was another radiation session; nine more to go!

 

[tyty333]

Hang in there...still sending dust to you and your partner. Tell her we're thinking of her and that we said !

 

[Inkblot]

Tie a knot and hang on. My thoughts and prayers are with you and your partner!

 

[rosetta]

You folks are incredible. Thanks for helping to keep us going. Thing seem to be getting better; less pain and more eating, keeping food down, and energy. I am anticipating that may change when the chemo starts tomorrow, but Im prepared. We've gotten this far, and there's no way but forward. chemgirl, I am so sorry to hear about your mom. The treatments may have changed a bit since then but your description of the good days/bad days and temper issues are right on. I try not to respond to the nasty side. She gets frustrated with waiting and once something bugs her she harps on it making it worse, so I have been trying to head those moments off. When I see them coming, I discuss calmly and quickly the issue and suggest we should just focus on breathing for the moment since that is really the only thing we have to do that day.
Rosetta how awesome that you work in oncology. That must be tough on a daily basis. I totally admire you. We live in New York City. The name of the trial is
"Full Title

Endocrine Therapy in Combination with Anti-VEGF Therapy: A Randomized, Double-Blind, Placebo-Controlled Phase III Trial of Endocrine Therapy Alone or Endocrine Therapy plus Bevacizumab (NSC 704865; IND 7921) for Women with Hormone Receptor-Positive Advanced Breast Cancer (CALGB 40503) [Protocol 08-102]"
I am concerned that the fda un approved avastin for breast cancer treatment because while it did inhibit angiogenesis, it did not extend life and the side effects compromised quality of life. I think the side effects could be the reason that there was no extension of life. I wonder then if the drug, while blocking the formation of new vessels to the cancer, might also have had a bad effect on the maintenance of healthy tissues. Also wonder if the mechanism of either or both effects is known, and if so has there been any change to the drug or its administration to compensate. ie: some buffer to minimize the side effects? Otherwise I would expect that the combination of avastin with the aromatease will have the same side effects and result
I wish I knew what to do there. Her Dr is the Principle Investigator. I also worry that being double blind and placebo controlled we
wont know IF she is getting the avastin or not,

Hi VL

Firstly, nearly all clinical trials are double blinded. Neither you nor your doctor will ever know what you get, and thats required to prevent bias. I'm afraid there is never any way around that. I would look to see how many patients they've recruited, the follow up schedule (how are patients looked after eg when they have side effects) and whether this is a multicentred international trial.

Avastin has been trialled in other cancers such as colorectal cancer but the interim results arent terribly encouraging I must admit. That doesnt mean that it won't work for breast cancer, thats important to emphasize.

My advice is this: if there aren't any other established therapies available for your partner then I would seriously consider entering the trial, if your partner is the kind of person who would regret not trying everything. The side effects of avastin are significant but that doesn't mean everyone will definitely get them. She could get lucky. It is possible to stop treatment due to overwhelming side effects so it's never a case of no way out.

The honest truth is, nobody knows if avastin will make any difference at all, that's the whole point of the trial. All it is is a chance of getting a drug that MAY become standard practice in the future.

Good luck whatever you decide.

 

[princesss]

*hugs*

Thinking about you and your partner, VL.

 

[iLander]

Hi Vapid!

Checking in to see how you two are doing with the chemo. Is it going okay? Sometimes it can be pretty darn rough, sending dust to you in hopes that it isn't awful. . .