Saturn_Bound Posted May 10, 2021 Share Posted May 10, 2021 Hi All, I am with my mom at her 3rd round of taxotere/cyramza infusion. We saw the onc today and she is concerned because my mom's condition seems to be worsening rather than improving. She is using more oxygen throughout the day...she needs the oxygen to get dressed, brush her teeth etc. She also has these INSANE cough attacks twice a day that are a little scary. Also, she has lost about 10 pounds in a month because her appetite has gone down a lot--- we are going to supplement her calories with Ensure. I asked the question "is there a possibility my mom will get back to a place where she can walk more, and her condition improves?" and the oncologist said, "usually with stage 4 disease we see the condition worsen over time, not usually the other way around". Suffice to say it wasn't what we wanted to hear, but here we are. She has a new pet scan in 2 weeks to see whats going on exactly. From there if it is definitive that the chemo is not working the doc said we will move on to a combo of 2 different immunotherapies. (Keytruda had worked for about 4-5 months before the last progression, this time it will be a different type of immunotherapy) I feel strange. Sad that we might be running out of options soon, but somehow still a little hopeful. I know the doctor is trying to be radically honest but its hard to accept her condition cant improve a little if we find something that works. -Mariella, concerned daughter Link to comment Share on other sites More sharing options...
Tom Galli Posted May 11, 2021 Share Posted May 11, 2021 Mariella, Sorry I am late responding. Have been off on a long overdue family visit. On your oncologist's response, try not to evaluate the meaning of "usually" and "not usually" in the context of your mom's prognosis. We are all different. Your mother has progressed and she may progress again. I progressed after "curative intent surgery", then a multitude of recurrences. I'd put more stock on your mom's positive response to Keytruda and perhaps another immunotherapy alone or in combination with conventional chemotherapy. While it is always useful to plan for adverse outcomes with serious disease, it is generally not helpful to presume an outcome. Let's see what the PET reveals and learn about the next treatment forecast. Stay the course. Tom Link to comment Share on other sites More sharing options...
Sandy N Posted May 14, 2021 Share Posted May 14, 2021 I am on Taxotere and Cyramza right now. Will be going in for treatment #3 next week. The side effects of the Taxotere are horrid. I have severe muscle weakness in my legs, fatigue, no taste buds (so no interest in food), mouth sores (that was accompanied by a very sore throat so, again, food wasn't an interest or much of an option), among other things (including a 15-pound weight loss for which I'm OK with ). "Some" of the things your mom might be experiencing could be from this duo. However I don't think all of it is chemo-related so it's a good thing you are keeping on top of this with her medical team. I have requested to have my dose lowered and just extend the treatments because this is no life that I'm living right now even in between treatments - this was an option presented to me so I thought it over and decided it would be the best thing for me. I will at least feel a little better in between treatments. If you have any other questions about the "Dynamic Duo" (Tax/Cyr), let me know and please keep us posted on how your mom is doing. We're here for you! Link to comment Share on other sites More sharing options...
Saturn_Bound Posted May 24, 2021 Author Share Posted May 24, 2021 Hi All, it has been a rough couple of weeks! An little over a week ago my sister and I noticed my mom had been running a temperature, low grade fever at about 100.4. It fluctuated throughout the night from 99 - 100.8. The next morning we contacted the oncologist’s office, and per the nurse’s suggestion we took her to the ER. Of course they ran all sort of tests and they decided she had a small pneumonia that they treated with antibiotics. She stayed in the hospital for 3 days and nights until she had no fever for over 24 hours and normal white blood cell counts. while she was there they did a CT as well. The CT showed shrinking tumors and no new lymph nodes, which is a good sign the chemo is working the oncologist said. the problem is, if the chemo is working why is her condition so much more frail? She now cannot breathe on her own, bathe on her own, walk more than 2 steps, and is confined to the bed and chair all day, while on oxygen 24 hours at a level 3-4. the CT also mentioned possibility of “lymphangitic carcinomatosis” which after a quick Google indicates end stage disease and very poor prognosis. I brought this up to the doctor and she said it is hard to diagnose but she still thinks the chemo is working. im having a hard time staying hopeful as my moms condition seems to get worse with each passing week and the doctor so far has no plan of changing course of treatment. I’m sure she knows what she is doing but I can’t help but wonder are we doing everything we can? Link to comment Share on other sites More sharing options...
Judy M2 Posted May 24, 2021 Share Posted May 24, 2021 Pneumonia can knock you for a loop. Add to that chemo treatments. I too was very frail after radiation and chemo, mostly due to dehydration and weight loss. Your mom needs time to recover. It took me months. Has she been sent home with home health care? Will she see a respiratory therapist? Hopefully she'll still be on schedule for her next PET scan, when you will get more answers about treatment success. In the meantime, be careful seeking advice from Dr. Google. Link to comment Share on other sites More sharing options...
Saturn_Bound Posted May 24, 2021 Author Share Posted May 24, 2021 Hi Judy, Yes we have home health care now, the nurse comes by once a week and the physical therapist too. My mom actually had a pet scan scheduled today but the oncologist said because of the pnemonia it will be hard to differentiate from that and the cancer. She says next round of chemo taxotere/cyramza is scheduled as planned in 2 weeks and after that it will be a new CT. Thank you for the reminder not to Google statistics. And you are right, she needs a lot of rest and a lot of TLC. And prayers ❤️ Link to comment Share on other sites More sharing options...
LouT Posted May 24, 2021 Share Posted May 24, 2021 Mariella, Judy is correct with everything she is saying. Your mom's body is fighting multiple things at once. Cancer, treatment and then pneumonia. I remember my mom's chemo/radiation treatment and how she would be so weak she'd stay in bed most of the time, sometimes for a few days. Over time she would recover her strength. Of course she was under older treatments, but still with us our body has to put up with a lot. If you haven't done this already; you may want to check in with her medical team and ask for additional focus on her activity levels, breathing, etc. But, all in all it sounds like good news. The pneumonia is cleared up and tumors are shrinking. Push your docs to help with the other symptoms. Lou Link to comment Share on other sites More sharing options...
Judy M2 Posted May 24, 2021 Share Posted May 24, 2021 The after care is very helpful and effective. Slow and steady, small steps. When I went into a rehab facility for 10 days (after being hospitalized 10 days for emergency abdominal surgery), I couldn't even stand up. It took a lot of work over several months to regain my strength. But I eventually got back to 98% of normal. Recovery takes time, and the pace is different for everyone. Link to comment Share on other sites More sharing options...
Saturn_Bound Posted May 25, 2021 Author Share Posted May 25, 2021 Thanks all. As one of her caregivers (it’s my sister and I), I struggle between knowing how much to push her and how much to let her rest. She is effectively bedridden since the hospital but every other day she lets me wheel her to the living room chair for a couple hours. I hope this week she will have the energy to let me take her on a walk in the wheelchair around the block here. It’s crazy to think just 3 months ago we were on long walks around the neighborhood together. She is still eating which is good, just doesn’t have regular bowel movements which I think is due to the taxotere. We’re still in the fight...this is just the toughest round yet 💪🏾 Link to comment Share on other sites More sharing options...
Saturn_Bound Posted May 25, 2021 Author Share Posted May 25, 2021 Just wanted to show you all this is my beautiful Mom. She is important to so many people and we would be so lost without her. Please keep her in your prayers ❤️ Link to comment Share on other sites More sharing options...
LexieCat Posted May 25, 2021 Share Posted May 25, 2021 You're both gorgeous! And it's great to see she still has her smile. Hope she starts feeling better, soon. Link to comment Share on other sites More sharing options...
Judy M2 Posted May 25, 2021 Share Posted May 25, 2021 Beautiful women! She actually looks great, considering what she's going through. Good color too (nurses always look for that). I think the physical therapist will want your mom to sit up as much as she can tolerate. When I got back home from having emergency abdominal surgery last year, my physical therapist had me do a little walking (with a walker) on the sidewalk in front of my house. Many times this would make me sick, but every day I tried to go a little farther. For a healthy person, it was nothing, but it would exhaust me for the rest of the day. Before all that happened, I was healthy and walked my dog for an hour every morning (and I'm back to doing that now). Your mom's physical therapist will give her goals and exercises. There may be times when she won't want to, but every effort can help her in her recovery. She is lucky to have 2 such caring daughters. Celebrate every little achievement and it will make all of you feel good. Have patience because healing is a slow process. Link to comment Share on other sites More sharing options...
TJM Posted May 25, 2021 Share Posted May 25, 2021 Exceptional pictures! I wish I looked so good. Thanks for sharing Peace Tom Link to comment Share on other sites More sharing options...
LouT Posted May 25, 2021 Share Posted May 25, 2021 Two great looking ladies and the resemblance is apparent. You mom has a smile that goes on for miles. Lou Link to comment Share on other sites More sharing options...
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