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Topic: What's Next?

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: May 14, 2018 12:38PM

ThunderJeff wrote:

Hi All,

I haven't posted in a while--my apologies for the long absence. My mom is still hanging in there. After her xeloda + keytruda clinical trial failed her in January, she had 10 cycles of rads to spine followed by four cycles of gemcarbo (and she just started the fifth). Scans after fourth cycle showed things holding steady and maybe some lesion shrinkage, which brings us to now. She's down around 50 pounds since dx in October. It's actually shocking. So weight is an issue. Depression is another and I've been hounding her team to treat that as a high priority item (she's on buproprion, but I think they should give an SSRI a whirl). That said, docs want to stay the course for now.

So a few questions for the group: any thoughts on the best foods to keep the pounds on? Her frailty cannot be helping the recovery effort.

Have any of you taken "breaks" in a chemo that is showing some efficacy to let your body recover a bit? Her docs floated the possible of switching over to an endocrine therapy after a few more cycles.

Is there anything particularly promising in the pipeline? Last year verzenio was a nice launch, just curious what this very savvy group thinks about any next-gen therapies.

Thoughts and prayers to you all,

Jeff


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May 14, 2018 12:58PM Husband11 wrote:

We have a couple of registered dieticians in the family, and I know that when patients are not getting enough nutrition, they turn to man made formulations, like boost and ensure. I think its just the simplest solution, not to say its the most natural.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine)
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May 14, 2018 01:02PM blainejennifer wrote:

Jeff,

Chemo breaks are a thing. I'm about to beg for a week off of Doxil, even though I am stable and don't want to upset the applecart. I'm just too tired, and I want to accomplish a few things. Check with her MO. For ER/PR+ patients, an alternating plan of chemo, then endocrine, then chemo, then . . . works just fine.

As to the weight: what does your Mom like to eat? The problem with appetite loss is that you get full so quickly, then food gets nauseating. A lot of us enjoy smoothies. They are a great way to slip calories in without too much effort. At this time, don't worry about "good" food. She needs calories, so if she wants to eat twinkies, so be it. You can always cover nutritional deficiencies with a vitamin tablet.

With depression and weight loss, your Mom sounds like a great candidate for medical marijuana. Of course she's depressed - her body feels awful. If she can exercise at all it would be helpful, as it promotes happy chemicals in the brain.

She probably feels the loss of autonomy acutely. It is very hard to go from self-sufficiency to being the person who needs help to put clothes away. Or maybe that's just me :)

She's lucky to have you.

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on Navelbine Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/28/2012 Taxol (paclitaxel) Hormonal Therapy 6/5/2013 Faslodex (fulvestrant) Chemotherapy 7/1/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole) Chemotherapy 1/31/2016 Halaven (eribulin) Chemotherapy 8/31/2016 CMF Chemotherapy 11/1/2016 Halaven (eribulin)
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May 14, 2018 01:12PM sandilee wrote:

Hi Jeff,

I have a problem keeping weight stable, too. Chemo really takes away one's appetite. I try to eat small amounts often. I try to make smoothies with calorie dense extras like ice cream and bananas along with the healthy vegetables. Load up on butter on bread and olive oil on salads. Omelets with cheese and sautéed mushrooms, baked potatoes with butter and loads of sour cream, whole milk instead of the usual low fat, etc.

It's not a diet I would normally subscribe to, but if gaining some weight is a priority, serving the foods she enjoys and adding extra fat calories to it may help.

Verzenio is very interesting and some of the women on the site are in trials with some success. I would like to try it, but the $6000 a month price tag is a bit prohibitive. I am concerned that my insurance company won't cover it. Medicare does not. It may take more time before it is considered standard care and covered.

- 4/2015- Mets to liver. 6/2011-Mets to spine, ribs, and skull, 6/2011 radiation, Xgeva and Faslodex 7/2011 Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/4/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/13/2016 Doxil (doxorubicin) Chemotherapy 4/4/2018 Navelbine (vinorelbine) Targeted Therapy 6/6/2018 Verzenio Hormonal Therapy 6/6/2018 Faslodex (fulvestrant)
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May 14, 2018 04:53PM ThunderJeff wrote:

Thanks all for the responses--I'll keep trying to fatten her up.

Blaine, regarding breaks, is the normal protocol to resume the chemo that was working after going on endocrine therapy? Gemcarbo is a bit nasty, although her counts have held steady, so I think a change is imminent in a few cycles. I'm worried because she is only PR positive, and it's ~20 percent expression.

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May 14, 2018 05:29PM blainejennifer wrote:

TJ:

Breaks can work a couple of different ways. One is that you just take some time off a therapy, and resume that same therapy, with no intervening treatment. Another is that you switch to an endocrine therapy, and go back to a chemo when there is progression. I've done both once.

When I took a break from Halaven, with intervening treatment of CMF, the Halaven wasn't as effective as it had been before. Mind you, CMF wasn't an endocrine therapy. I don't do so well with AIs, even though I am strongly ER+, with the exception of Faslodex, which worked great for me. In recent discussion with my MO about "what's next?" (our age-old, popular question around these parts), he's got no problem with revisiting some treatments that I progressed on, as long as there has been a gap of about 4 years. He was thinking of giving Faslodex another go when/if I progress on Doxil, with the added twist of Kisquali (I think).

On Doxil, I'm always taking mini-breaks. It's supposed to be a once monthly infusion, but I have taken a week break at least three times now, and more often, super mini breaks of up to three days. Two of the week breaks were for radiation treatment - Doxil and radiation don't play well together, and once was for cataract surgery.

With your Mom's low expression of hormone, how has she done on endocrine therapies?

She is lucky to have you. My kid is supportive, but has pretty much waited to be told what to do. He's only 18, though. How grand to have a kid that wades in and grabs some reins.

Jennifer

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on Navelbine Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/28/2012 Taxol (paclitaxel) Hormonal Therapy 6/5/2013 Faslodex (fulvestrant) Chemotherapy 7/1/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole) Chemotherapy 1/31/2016 Halaven (eribulin) Chemotherapy 8/31/2016 CMF Chemotherapy 11/1/2016 Halaven (eribulin)
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May 14, 2018 07:34PM azs40 wrote:


Vanilla milkshakes

with ensure.

azs40 Dx 8/2008, IDC, Left, 1cm, Stage IIIA, Grade 2, 4/28 nodes, ER+/PR+, HER2- Dx 11/2017, Stage IV, ER+/PR-, HER2-
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May 15, 2018 03:47PM ThunderJeff wrote:

Thanks all for the additional replies--I'll float the ensure + milkshake idea. I'll try one myself first for, science ... (shifty eyes).

Blaine--thanks for the information, super helpful to know there's a few different ways a "break" can take place. Gemcarbo has been rough on her. Cycle 5 wraps tomorrow and they're thinking 2-3 more, then re-scans. I'm just glad we slowed/stopped the progression after Xeloda/keytruda didn't work.

And thanks for the kind words--but I'm not so much a kid as a large man with kid-like tendencies (I'm 30). That said, given that my parents are preoccupied (one being St. IV, the other burning the candle at both ends as caretaker and dentist), I try to get into the weeds and source as much useful information as possible. And oh my is this board generous and compassionate. Just wonderful people.



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May 16, 2018 12:53AM JFL wrote:

Jeff, on the food front, I agree with some of the other posts that it is more important that she eat, regardless of what she eats. I find that easily digestible (simple carbs + fats seem to be the best) or comfort foods are usually easier to take in when i am having treatment - rice, pasta (especially fettucini alfredo), bread/toast with butter, grilled cheese sandwiches, anything with peanut butter and/or nutella, potato chips, ice cream, sweets. I am working hard to maintain my weight now/not lose any more and am generally a very healthy eater but have had to suck it up and eat more "junk" to try to maintain my weight. One note about bupropion - I was never a big sweets person but that has changed since I started bupropion. Bupropion increases pleasure and reward responses. Now when I eat a cookie, for example, the taste brings me an unusually high sense of pleasure, like it is suddenly the best thing I have ever had. You might have some success with sweets - cookies, donuts, baked goods, ice cream, candy and the like. Buproprion has been known to be linked to sugar cravings.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant. Extensive liver and bone involvement. Currently on Doxil and XGeva. Recently had Y90 liver radioembolization. ER+/PR+, HER2 equivocal (IHC)/negative (FISH) as of 8/2017 liver biopsy. Dx 9/2006, IDC, Stage IIB, Grade 3, ER+/PR+, HER2- (FISH) Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/5/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/13/2017 Aromasin (exemestane) Targeted Therapy 5/13/2017 Afinitor (everolimus) Chemotherapy 8/18/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/23/2018 Doxil (doxorubicin) Radiation Therapy 4/9/2018 Liver
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May 16, 2018 10:50AM ThunderJeff wrote:

I did not know that, JFL. I'll definitely mention that to her.

And thank you all for taking the time to be so kind. I must say--mother's day was a bit rough. My wife and I are expecting and told my mom on Sunday as a surprise--and although she's excited you could see the fear in her eyes that she is convinced she wont be able to be the grandmother she so longs to be and for as long as she wants to be. It was a swift kick in the gut and a reminder of how this horrible, horrible disease can take that life you thought you'd have. I've battled bouts of depression my entire adult life, so when she was dx'd with liver, lung, and bone involvement in 10/2017 I immediately got on an antidepressant so I could be there for my family at my best. I feel like Sunday undid so much of the "handle" I thought I had on things, better living through medicine, etc., and I dont know what to do. If I could take her pain away I would in a heartbeat. I keep telling her that we live in extraordinary times from a medicinal advances standpoint (was oncology counsel at a large pharma company until recently), and I truly believe that we are on the precipice of great advances in solid tumors. I just hope they happen in time for her and all of the women on this board.

Bleh--so much word vomit. First thing is first--get that woman a cake.


Hugs, prayers, and positive vibes to all

Jeff

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May 16, 2018 12:14PM blainejennifer wrote:

I feel we are like those diabetes patients, who were clinging on, until Dr. Banting came out with insulin treatment. https://www.nobelprize.org/educational/medicine/in...

Can you imagine being Leonard Thompson? Even in our disease, HER2 used to be considered a very bad thing, until Herceptin came along. Now, I'm jealous of HER2 patients, because it is such an effective protocol.

We just need to hang on. So lets get as much exercise as we can, and eat as well as we can to be ready for the next great advancement in MBC treatment.

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on Navelbine Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/28/2012 Taxol (paclitaxel) Hormonal Therapy 6/5/2013 Faslodex (fulvestrant) Chemotherapy 7/1/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole) Chemotherapy 1/31/2016 Halaven (eribulin) Chemotherapy 8/31/2016 CMF Chemotherapy 11/1/2016 Halaven (eribulin)
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May 16, 2018 12:34PM ThunderJeff wrote:

The Her-2 space certainly does have some powerful options with trastuzumab and ado-trastuzumab. You're absolutely right about game-changing advances. I keep telling her it's not foolish to hope in 2018. It just isn't.

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May 16, 2018 01:20PM sandilee wrote:

Congratulations! A new life in the family is so exciting. It should give your mom something big to live for.I'm sure she has fears about her health, but I can assure you she is delighted with your news in spite of it.

Does your mom live alone, Jeff? It would certainly make dealing with this disease harder, from an emotional point of view. Including her in family activities as much as you can will help with her depression. Nothing makes me happier than spending time with my family.

- 4/2015- Mets to liver. 6/2011-Mets to spine, ribs, and skull, 6/2011 radiation, Xgeva and Faslodex 7/2011 Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/4/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/13/2016 Doxil (doxorubicin) Chemotherapy 4/4/2018 Navelbine (vinorelbine) Targeted Therapy 6/6/2018 Verzenio Hormonal Therapy 6/6/2018 Faslodex (fulvestrant)
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May 16, 2018 01:41PM ThunderJeff wrote:

Sandilee--much appreciated. Very excited, nervous, etc. Still seven months away, but I know that time will fly by.

My mom does not live alone--my dad is with her, but he's still working quite a bit. They have in-home help when he's away. Nest is essentially empty, although my brother just came home after graduating from college, so that should help. The thing is, unlike a lot ofyou St. IV ladies that can "live life," my mom's first five-ish months post diagnosis kept her essentially bedridden (she actually did develop a couple bed sores) because of a very, very painful vertebral fracture she sustained at C6 due to a lesion + intense yoga (she's an instructor). That led to a rather trainspotty pain management regimen that at its peak had her on 100 mcg fentanyl a day, plus chemo, plus nerve pain blockers, etc.

The fentanyl dose has since been halved, and shes back to walking around again, and more and more each week--but a lot of damage done to get to this point: she's lost 40+ pounds and her poor legs atrophied. In hindsight, surgery on the spine at the outset would have been the right call, but her medical team, including a neurologist recommending surgery, opted for the clinical trial (that failed).

I think my dad is doing a lot, but I've noticed that lately there seems to be a distance there. I've heard this is not uncommon in caretakers out of self-preservation--her needs have been extensive, but I worry about her because her universe is so small at the moment.

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May 16, 2018 06:11PM LoriCA wrote:

Jeff I think I can relate a little bit to what your Mom is going through. My IBC spread so quickly that I was knocked completely off my feet in a matter of days after my DX; one day I was perfectly fine and the next I was in the hospital fighting for my life (my family was told I probably wouldn't last two months because it was growing so fast). Although I wasn't completely bed-ridden like your Mom, I slept most of time, needed help with most activities and I considered it a good day when I was able to wash up and change my clothes before laying back down. Then I lost complete use of my right arm when it spread to the brachial nerves. I too was on very heavy pain killers (fentanyl and morphine, plus gabapentin and something else for breakthrough pain) so I was in a complete fog, and I was so miserable that I didn't even want to be around anyone, especially before we got my pain meds dialed in and I was dealing with breakthrough pain. It was a long six+ months before I was back on my feet and felt anything close to somewhat living. The isolation is so very hard and adds to the depression. Both of our families are on the opposite coast, very few friends reached out to help, and it's such a tremendous strain on the primary care giver, especially if he's still working like my husband is. Thankfully my SIL flew out here to help nurse me through those first critical months and keep my household going because my husband was about to have a breakdown and I was too sick and drugged up to see it. I'm so glad that your parents have you to help out, they really need it. And as much as your Mom's health is the priority right now, please don't forget that your Dad is going through a lot too, he's watching his wife fight for her life and he can't fix it. I honestly believe that it was much harder on my husband than it was on me. If you haven't yet, taking him out to lunch or his favorite activity (and hopefully giving him a chance to talk about it) might be a good idea. There are also support groups for Stage IV caregivers. You have a new baby on the way (congratulations!), you have a lot on your hands too!

To your original questions - I stopped a chemo drug even though it was working well (and saved my life) before I was stable when I developed an SE that got so bad I was telling my husband and MO that I would rather die than live that way. It's a break from chemo, but my MO said it can't be a "break" from that specific drug because when I restart we'll need to try to find another drug that works. It took 2 months for the SE to wear off enough for me to be functional again, and now my super-aggressive cancer will be resistant to that drug. My MO was very much against stopping for that reason. In the meantime I'm still on targeted therapy and keeping my fingers crossed until later this month. If we find out that H&P hasn't been holding the line these past couple months I still won't regret it. I know it was a big risk but I feel so much better and now I'm physically and emotionally ready to go back on chemo if/when I need to. I put weight on, am off the anti-depressant, have made a drastic reduction in my pain meds, getting my exercise, am finally back to living a somewhat normal life after six+ months of hell, and most importantly I'm happy and feel good. I needed to do it because for me, quality of life is everything and I would rather have three good months than a year of being miserable (and making everyone around me miserable) if it can be avoided, so I was willing to take the risk. Other people are willing to go through anything to extend their life, and that's okay too. The most important thing is, how does your Mom feel about taking a break? If treatment is affecting her mentally and emotionally too and it's been going on for an extended period of time, that interferes with the healing process. The whole family needs to be willing to support her decisions about her treatment, and it's important to talk about it. The one thing that meant the most to me is that every single person in my family let me know repeatedly that they will support whatever decisions I make about my treatment.

And I also agree with the Ensure milkshakes! I was under orders to gain weight and I had at least one every day. No matter how bad my appetite is I can never resist ice cream. Chocolate Ensure with coffee ice cream was a favorite, and vanilla Ensure with strawberry ice cream is great too. My MO told my family to feed me all the cookies, cake and pasta I would eat. I was concerned about the sugar/cancer connection, but my scan showed that the chemo was working well despite all of the sugar I was ingesting. I think the most important thing is to let her eat whatever she's in the mood for, and indulge any cravings, even if it means eating ice cream all day every day. Now is not the time to worry about healthy foods and a balanced diet.

Hugs and prayers to all of you!

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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May 20, 2018 02:21PM ThunderJeff wrote:

Lori,

Thank you so very much for all of the information; those six months sound awful, and very much akin to my mom's journey thus far. I'm glad you're feeling better and enjoying life.

I think a break is probably inevitable on our end, as the last two cycles (4 and 5) of my mom's gemcarbo cycle: week 1 (gemzar) week 2 (gemcarbo) week 3 off, and repeat, have been brutal. Her latest scans were actually pretty encouraging: pulmonary mets are all steady or have shrank, all lymph node mets shrank, at least one liver met shrank (and another was noted as possibly necrotic and low density despite area increase, which to me suggested the lesion is now a mass of dead cancer cells). Only concerning finding was an adrenal gland lesion--which I understand to be a rarity for BC mets. So the treatment appears to be efficacious ... but there is not quality of life after the gemcarbo infusion at week two. By the time she's recovering her strength the cycle starts over.

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