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May 17, 2018 08:11AM
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.
9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+
9/26/2017 Taxol (paclitaxel)
2/6/2018 Perjeta (pertuzumab)
2/6/2018 Herceptin (trastuzumab)