Best Of
Re: Stage IV MBC Fitness
I got a good walk in yesterday, but with these shingles I've been dealing with, the walks seem to actually set me back. I'm finding that I'll have a good day, feel better, so go for a good long walk; then the next day I feel worse again and am too tired and fatigued to go out and walk. I'm finding that there's a lot that comes with shingles that you just don't really hear about. We hear about the painful rash and blisters, but not the overall flu type stuff and dramatic fatigue.
I'm glad to see others here "going for it" at whatever level they can, and again Chicagoan, I'm glad you reactivated this thread. It seems to be inspiring a lot of good things!
Re: Stage IV MBC Fitness
Really quiet here, over a year but life does certainly get busy.
I have dealt with 3 falls this year, in house. I am blaming them on flu and fever I was told I had. That was end of January into early feb then dealt with some digestive issues which were very unpleasant for about a week, took meds and that went away. I was really deconditioned from the flu and lack of activity so started exercises and PT from the bed, I have been known to march in bed, strengthen arms pulling myself up with a bed ladder as well, pull from laying down to sit up straight to get out of bed safely. feel like these help and handy dandy cane works well to help me feel secure. I also take paratransit, a service that picks me up and drops me off at home, go to appointments an hour early so I can take a walk around the halls of the hospital so that is helpful too.
Hope everyone is doing well and if not, in your pocket lending support if needed.
Re: Phesgo - Clinical trial
Hi @coachg!
I'm also in the ADEPT trial and on a very similar schedule to you. I started with PHESGO (4 injections so far) and hormone blockers around the same time as you.
I had a terrible response to the initial loading dose of PHESGO. Lots of vomiting and severe diarrhea starting about 2 hours after the injection. I ended up in the ER due to dehydration. Thankfully, my last 3 injections have all gone much better in that regard.
With my second injection, I had an issue with severe pain across my entire thigh that caused me to limp for 2 days (started several hours after the injection). I did a little bit of investigating and determined that the likely cause was that they gave me that injection too fast. They are supposed to give the injection slowly over 5 minutes so the hyaluronidase can open up the tissue and let the pertuzumab and trastuzumab spread out instead of pooling in one spot. The person who gave me that injection took less than 2 minutes to give the full dose. Ever since then, when I go for an injection I make sure to remind them to take the full 5 minutes. I also put my phone on my lap so we can both see it, and I set a 5 minute timer. It seems to help. No problems with thigh pain since I started doing that.
One other weird side-effect is a lingering discoloration going up my thigh from the injection site. It's about the size of grapefruit and is a similar discoloration to what I'd see if I pressed something hard against my thigh for a while. It happened on the right thigh after the 1st injection. Then nothing from the 2nd and 3rd injections. Then it happened again on the left thigh with the 4th injection. It does fade over time, but even now there is still some residual discoloration from the 1st injection.
Other than that, I deal with diarrhea on a recurring basis, though nothing as bad as what I had after that first injection.
I've only been on Letrozol for about a week now. Like you, I'm very concerned about the potential side effects with that. I'm trying to do everything I can to take care of my health to help mitigate any of those effects.
Hope all is going well with you. Looking forward to reading an update.
Re: Exercise "Better than drugs" New ASCO Research from Other than BCO
Olma - I can't quite remember now just where I learned about intermittent fasting, but whatever it was, it eventually led me to Valter Longo's work too. Re the walking and 10 minutes kind of thing, Tougholdcrow recently posted on the MBC Stage 4 Fitness thread about how things like taking the bus and just walking that little bit of extra to and from stops, etc. can help too. I added that even when driving, parking just a little further from your destination and walking a little bit that way can help too. It all adds up.
Chicagoan - Oh that fatigue that comes before diagnosis. I had no clue that the fatigue I was feeling just taking a shower was indicating cancer. With hindsight I can see it all. I thought it was the "getting older" thing initially, so never thought of going to the doctor. The treatments have helped and things like showers don't wipe me out as much these days, although it is harder in general. Yes, I agree that even after these diagnoses and treatments, we can rebuild strength and continue to improve in many ways. Actually since I don't work as much and don't have all the sitting that was involved with that, I've been able to walk more and I think I might actually be in better physical shape in that regard.
Re: Exercise "Better than drugs" New ASCO Research from Other than BCO
I think drs and medical centers should push this more. I credit exercise with keeping me cancer free for all the years after my initial diagnosis. I could not tolerate hormone inhibitors. The miniscus tore off my knee one day after a work out and I had to stop some of what I was doing due to pain. Within 3 months my cancer came back. Took 6 months to realize something was seriously wrong because the pain meds for my knee cause gastro reflux which has similiar symptoms to a pleural effusion. It wasn't until I became short of breath that I realized something else was going on. Sometimes life sucks. Since then I have gotten back to working out. Just not as much as before mets.
Re: ER-, PR-, Her2+ Roll call
prayers lifted for @beekaycro24 for a quick recovery and total healing, God be with our sister. Amen.
Re: Exercise "Better than drugs" New ASCO Research from Other than BCO
@olma61 and @threetree I remember that in the first several months after I was diagnosed, my body was so weakened by the cancer that I could not even walk a half mile without resting midway. I walked outside with poles and had to sit on a bench every ten minutes or so, then get up and walk a little more. I say this to encourage those who think that they can't exercise anymore. Even after our bodies have been ravaged by cancer and treatment, in most cases, we can rebuild strength and stamina by doing what we can, resting and then getting up again and doing a little more.
Re: DCIS high grade- ER+
About me - My report shows high grade DCIS / ADH. Not sure about which one.
High grade DCIS is a type of very early stage of breast cancer(can be considered stage 0). It is good that you have found out early. The cancer cells haven't spread or it is only inside the milk ducts. This is only the starting stage, you can easily get rid of this. General options for treatment involves surgery as the most popular. Other treatments involve hormone therapy, radiation therapy and its combinations. The symptoms you mentioned except pain are related to DCIS. The pain may indicate high abnormal cell growth and requires immediate treatment.
Be confident in your recovery no matter how things go worse, because that's more important than any other form of treatment. Its normal to feel depressed and sad within yourself. But what's important is to overcome the sadness and believe that you can get well. Your family stands with you no matter what and with that you can face anything. I pray for your fast recovery. May God heal you soon!
High grade DCIS / ADH. Lump in right breast. Formerly treated with Duct Ectasia in left breast.
I had been experiencing a small pain in underarms and left breast in 2024. Later it was found to be Duct Ectasia in a medical report and no intervention was done as it wasn't serious. And around 25th May 2025 I again felt uncomfortable with my breast and arms and went for a mammogram. Further reports from MRI, Breast Biopsy showed "a lump" and "high grade DCIS / ADH" in the right breast. The biopsy report doesn't confirm DCIS or ADH and at the same time mentions "high grade".
I am confused of which treatment I should proceed, what tests are required, whose advice is best, furthermore, I am confused whether the thing I am dealing with is really cancer or just abnormal breast tissue growth. As of now, before confirming the severity of the disease, my doctors urge me to immediately do right breast mastectomy. I don't know want to do. Please guide me with your opinions and similar experiences. Thank you in advance
Re: ER-, PR-, Her2+ Roll call
It's been 10 years since I've been in active treatment - but I am still ER/PR minus & HER2 plus. I agree Grammie. Worried about beekaycro. Holding her close.
minustwo