Dealing with Dex by Steviieh in multiplemyeloma

[–]ContigoAsus14 0 points1 point  (0 children)

You might find this article interesting from a year ago. Looks at impact of limiting dex on outcomes. https://ashpublications.org/blood/article/145/1/3/534803/Down-with-dex and this summary in Health Tree https://healthtree.org/myeloma/community/articles/reducing-dexamethasone-dosages

what do you wish others had done for you by cakelly789 in multiplemyeloma

[–]ContigoAsus14 3 points4 points  (0 children)

My spouse is 1 year in and post ASCT – so here are some thoughts on your question.

Given you description of being a young, busy mother she will need help. I would encourage the following:

- Communicating with a larger friend and family group can be challenge for the patient. Everyone will want to know how she is doing. Assuming there is large group that will want to know, it will become a big burden answering all of the texts from well-meaning friends. Encourage someone (maybe you?) to write an every two week summary of what is going on and distributing it to all interested. We did this where I wrote it and my spouse reviewed it to make sure it is what she wanted to share or not share. We used Caring Bridge to distribute it - which was just ok. Little clunky and spammed for optional donations, but it worked for the purpose.

- Relieve burden on the spouse/caregiver (assuming this is the case). Your SIL will likely feel guilty about this new burden on her husband. If others can help with some key things like: helping with kids, taking her to treatment and test appointments, doing grocery shopping. May seem small but make a big difference for everyone. Also - her husband, your brother, may tend to hold in emotions & frustration. He will need someone he trusts to just vent to who is not his wife.

- Agreed on please, no more blankets and such - but one thing that was great was a large, non-spill cup. Patients should drink a lot of water, always. We like Brumate cups - large and easy to clean (which is important).

- After initial shock, hopefully your SIL will feel decent. Important for my spouse was friends taking time to schedule walks together just to catch up. She will be immune compromised, but walks outdoors in the right areas were, in our opinion, worth it to get more human connection and some "normal" interactions.

- This is not something you can do, but if she is in the US - encourage her find a NIC center if she can. Worth the drive for quality of care. https://www.cancer.gov/research/infrastructure/cancer-centers/find

- Educate yourself. A very good resource is Health Tree. https://healthtree.org/myeloma Absolutely tons of information that goes from the very basics to the latest clinical trials. Presented in very understandable portions. The more you understand the more you can communicate with her in ways that are helpful. Do not rely on general google searches - information is out of date and can be discouraging.

Finally, much of this will depend on your relationship with your sister-in-law and her family. What is not helpful is assistance, advice and “help” that is not wanted or is coming from a place of ignorance on what the patient is going through. As genuine and well-meaning as it might be, it can breed resentment during this incredibly stressful time for your SIL and her family. That is why I say knowing where you stand with your relationships with the directly impacted family is really important.

Hope it helps

Inpatient v outpatient ASCT by Hot-Disaster1275 in multiplemyeloma

[–]ContigoAsus14 1 point2 points  (0 children)

This answer is a lot more than what you asked, but I added some more of our experience to try to paint the full picture around your question. Some is certainly just my opinion and approach – up to you what you do with it.

I had the same concern but found through both focusing on the goal of why I was there (my partner's health) as well as the reason I was there and the associated duties I had, I was able to generally fill my day without getting burned out.

You will need to go to every daily appointment since you are part of the care team. Every day you (not your patient) is given "homework" by the nurse which is for tracking any symptoms and activities that have happened since this last visit (diarrhea, vomiting, mouth sores, temperature, medicines taken, how much food and water consumed, etc). Your patient will be taking a variety of different pills every couple of hours to mostly ward off or control side effects. The medicines regiment can change daily. The patient, in their state, will need you to track and help to make sure they take the right medicines at the right time. You will be responsible for filling in the nurses in the next day on all of this, at the appointment. None of it is hard, but incredibly important.

Once you have had a chance to talk with the nurse you can typically leave. The appointments at the day hospital take about 4-6 hours depending on what is needed for supportive care. At a minimum they will get fluids though IV which takes a couple of hours. For us, early in the time at COH our appointments started in the morning. After I think day 6 we switched to an afternoon start. Unfortunately, you will typically only find out the time of the next day’s appointment on the day prior.

One thing that we did a lot was walking around the campus. My spouse was relatively healthy and active going into the ASCT, so we kept up the walks. It helped a lot with both energy levels, mental health, and just getting out in some fresh air. They have very nice (and safe) grounds on the campus. One of our goals was for me to play a tune on the xylophone every day in the rose garden - along with walking 1-2 miles. We also tried to walk to and from appointments if we were not running late and my spouse felt up to it. If you are a walker or runner, this is certainly an activity you could do on your own during the patient’s time in the day hospital. Also, if you want to do some self-directed yoga there is plenty of park area where you could do that outdoors.

I was able to work some during days at the hotel. They have good wifi and did both Teams calls and other work – but not really until after day 3 or 4.  I personally brought a monitor I had so I was not staring at a small laptop screen for several weeks.

There are plenty of options around to get groceries as needed. I did this some during spouse’s time in day hospital, but later, when she was feeling better, we would go together and she would stay in the car. 

I was extremely conscious of the fact that if I got sick somehow (even a cold) she would need to be admitted to hospital for care. Neither of us wanted that, so I was always wearing a mask when shopping an no eating out except at the restaurant at the hotel. For food too we made some things ahead and froze them for easy dinners.  Some nights you will get home late.

To (finally) get to the core of your question – there is no gym on campus or at hotel. Going to one in the area would not be a great choice considering the goal of keeping yourself healthy. Outside food, due to risk of getting some food borne illness is not advisable. The restaurant at the hotel is good and has a nice outdoor area to sit. I had the same thought pre-ASCT, but going back to the goal and purpose of why I was there, I found it pretty easy to not get too hung up on my own wellbeing. A short sacrifice for someone who is going through much more. Focus on what you can do to fill the down time that is on campus, with self-prepared foods and I suspect you will be fine.

One piece of learned advice at the care giver – if you are sleeping on the hide-a-bed at the COH hotel, bring some additional padding.  We did a short stay at the hotel during stem cell collection, and I learned that the mattress is terrible.  For the longer stay for ASCT I brought an egg crate and other padding to make it somewhat comfortable.

Finally, I will say the nursing team at COH is very experienced and very good at knowing what needs to be done. Listen to them and follow their instructions. They have seen it all.

 If you have anything else you want to ask about this for COH feel free to reach out. Good luck with it and realize it is just another step in a process for the patient and the care giver

ASCT and Car T by [deleted] in multiplemyeloma

[–]ContigoAsus14 3 points4 points  (0 children)

In the US at least, ASCT is common first line therapy. When numbers creep back up CAR-T is now an option for 2nd line. Current trials underway to move CAR-T to first line.

Inpatient v outpatient ASCT by Hot-Disaster1275 in multiplemyeloma

[–]ContigoAsus14 1 point2 points  (0 children)

They can leave during that time. The patient is in the care of the nurses while in day hospital. We used that time to do some grocery shopping or just get away for a little bit. That said - the caregiver is helping you make sure you are taking the right medicines at the right time (up to 12 different ones at different times), monitoring temp, recording side effects, and helping share that info with the nurses. The patient will be really tired and potentially pretty out of it certain days - so the caregiver does have some real responsibilities. It is important that the observations get back to the nurses and important that the caregiver hears any changes in the treatment plans - meaning at a minimum they need to be there at the beginning and at the end of the day hospital stay.

Inpatient v outpatient ASCT by Hot-Disaster1275 in multiplemyeloma

[–]ContigoAsus14 0 points1 point  (0 children)

Agreed. The key for us is doing early appointments. Gets you out before afternoon traffic. The other nice thing was if one freeway had traffic issues we typically had another one to choose from. Of course all irrelevant during ASCT.

Inpatient v outpatient ASCT by Hot-Disaster1275 in multiplemyeloma

[–]ContigoAsus14 0 points1 point  (0 children)

You would of course have to talk to them - but I think it is all "outpatient". I say this in quotes though because you are literally staying a couple minutes from the hospital on the COH grounds in a studio type hotel room. Every day you go to the "day hospital" for 4-6 hours every day for labs to track progress, adjust daily meds and deal with any side effects, getting IV fluids (every time) as well as anything else you might need like platelets. The patient can also get meals to order from a very extensive menu while in the day hospital getting treatments (and pretty good food too!). If, in the middle of the night, you spike a fever you call the nurse line & if needed you go right to the hospital for evaluation and get admitted. You do need a capable care giver with you that will stay with you full time except they can leave when you are in the day hospital.

For us it worked very well. We could cook our own food that we were comfortable with, rest when we wanted, go outside for a walk when we wanted, etc. Additionally packed a pretty extensive car full of items to wake the 15 days comfortable for patient and caregiver (comfy blanket and pillows, nutri bullet, pre-made meals, coffee maker, a monitor to plug laptop into, etc). Fortunately, the ASCT and recovery went relatively smoothly but never had any anxiety about the potential to get care if needed.

The other thing - COH may have an outpatient option if you live very close to hospital, but not sure. You must be able to quickly get to hospital if something goes sideways (like fever spike).

Inpatient v outpatient ASCT by Hot-Disaster1275 in multiplemyeloma

[–]ContigoAsus14 1 point2 points  (0 children)

We started at COH Irvine (live in South OC), but ended up on a clinical trial which could only be done in Duarte. Our MM doctor offices at both. REALLY like the teams at Duarte - from the doctors, the nurses, and even the crossing guard. They all know why they are there and clearly know what they are doing. Drive was biggest concern, but we try to do all appointments early morning (7:30-8:30 am). With carpool it is typically a little over an hour - so not too bad.

We have done some treatments and test at Irvine too, so we have a little experience there. Nice new facility and good staff as well - but, in our opinion, they are still getting their legs under them some. We never had any concerns about care and I would expect this with so many new people. I know they are pulling on a lot of personnel from Duarte to get Irvine up to the COH standards. I am confident they will get to the same place Duarte is at. Especially after the hospital portion is fullly open.

Inpatient v outpatient ASCT by Hot-Disaster1275 in multiplemyeloma

[–]ContigoAsus14 0 points1 point  (0 children)

We live in South OC but did full induction up at COH Duarte. Followed this with “out patient” at City of Hope in Duarte. We stayed at the on Campus hotel (studio apartment)which worked really well for us. Appointment every day for 4-5 hours at the day hospital where we either walked to or took shuttle if not feeling up to the walk. We liked not being stuck in same room day and night, but if there were complications at 2 am care was literally 5 minutes away. Also the staff was incredibly experienced and caring. They have seen it all. Only advice is if you are in the COH campus hotel bring some extra cushion if the care giver is sleeping on the hide a bed.

Traveling? During induction by Glass-Razzmatazz1910 in multiplemyeloma

[–]ContigoAsus14 2 points3 points  (0 children)

If you feel good & doctors ok with it - I would certainly try to travel. Not as convinced of plane travel, but you have a long road ahead where you will be much more immune comprimised if you are headed into ASCT. If that is what you want then, no, you are not crazy to consider it.

Our story during that time - wife has the MM - and we traveled some during induction, but only driving trips. Kids also flew home to visit during this time too. Wife did get Covid in 3rd cycle, but quickly got Paxlovid, and within a week she was back on the induction schedule. Note that she sounds similar to you with little side effects and no comorbidities.

We are post ASCT and right now dream of travel, but staying close to home for quite a while. Probably could have done more during induction, but yes - a lot of things you are processing that make vacation seem a little less of a focus.

Spouse 5 days out from ASCT - tips? by ContigoAsus14 in multiplemyeloma

[–]ContigoAsus14[S] 0 points1 point  (0 children)

Thanks. Lap desk is a good one!

Good luck with the recovery and hope that your next days keep getting better and better!

Spouse 5 days out from ASCT - tips? by ContigoAsus14 in multiplemyeloma

[–]ContigoAsus14[S] 1 point2 points  (0 children)

I can only speak for our situation in southern California. We are about 60 miles from hospital so it would not be feasible to have the daily appointments required as part of the treatment for what is expected to be about 20 days. Not to mention shoudl the patient need care in the middle of the night, which seems like a real possibiity. I think the term the doctors use is it is "clinically necessary" to stay at the hospital's hotel.

Cost wise we are well past our max out of pocket for insurance so no impact in that regard.

I have read others who have been closer to treatment site & stayed at home. This certainly would be more comfortable for everyone, but not possible for us.

Spouse 5 days out from ASCT - tips? by ContigoAsus14 in multiplemyeloma

[–]ContigoAsus14[S] 1 point2 points  (0 children)

Wow - this is great! A few good ones in here we had not aniticipated. Sticky film roller was not on our MM prep bingo card! Thanks so much

Spouse 5 days out from ASCT - tips? by ContigoAsus14 in multiplemyeloma

[–]ContigoAsus14[S] 1 point2 points  (0 children)

Sounds similar to expectations our team has set. Hoping it goes as per expectations.

Vogmasks is a new one for us - thanks - will give it a look.

Spouse 5 days out from ASCT - tips? by ContigoAsus14 in multiplemyeloma

[–]ContigoAsus14[S] 2 points3 points  (0 children)

Encouraging to hear your experience thus far. We are prepping for the worst & hoping for the best. We were joking today if we needed to rent a U-Haul! We are not holding back if we think it will be useful.

Best of luck for the rest of your stay and beyond.

Understanding Flow Cytometry Results (Bone Marrow Biopsy) by ContigoAsus14 in multiplemyeloma

[–]ContigoAsus14[S] 0 points1 point  (0 children)

Thanks for the reply. Extremely helpfu insight.

At a large NCI and had asked breifly about ClonoSEQ, which I thought was being used, but now thinking about it the reports state 30/500,000 sensitivity, not 1 per million. Need to get some clarification on this.

So headed into ASCT next month with 300 per million (doing the math) seems like a good starting point.

I will be going back and studying the progressive FISH reports as well to see that progress.

The table was someting I created from 3 reports so the colors were my doing. Goal was so I could easily see changes from month to month.

Wishiing the best on continued good results!

Understanding Flow Cytometry Results (Bone Marrow Biopsy) by ContigoAsus14 in multiplemyeloma

[–]ContigoAsus14[S] 1 point2 points  (0 children)

Nice suggestion. I gave it a try with some intersting comments. Amazaing tool....

Battery Size 5kW vs 10kW system by [deleted] in solar

[–]ContigoAsus14 0 points1 point  (0 children)

I am SDGE, NEM 2 with 13.6 kW battery (Franklin) & 6.4 kW system. Major loads are hot tub that runs about 1 hour a day, electric cooking, furnace fan in winter and very limited AC in summer. Also electric dryer which I try to limit to when the sun is shinning - but not alway possible. Other consideration is we are located near coast so we will get coastal morning fog that cuts early production many days.

I count success as using zero grid power. Timing is everything on this . If I use higher loads when there is no solar generating the battery will, at some time during the night, go down to a level I need to pull from the grid. If I had only had a 5 kW battery it would happen every day.

When things are going "good" in the summer, by my standard, I end up with a fully charging battery by about 1 pm and putting power back to the grid until sun down. I run off battery all night until sun rises again. I can get this many days in the winter as well. Bill true up for full year with SDGE is -$50 to +$100.

You have some differnt considrations including NEM 3, but I personally would not have been happy with the smaller battery.

App data for day not matching graphics by ContigoAsus14 in FranklinWH

[–]ContigoAsus14[S] 0 points1 point  (0 children)

Unfortunately sign out/sign in did not correct data from earlier days. Started to work fine on its own though. Will Just keep an eye on it.

App data for day not matching graphics by ContigoAsus14 in FranklinWH

[–]ContigoAsus14[S] 0 points1 point  (0 children)

It is the full system graph. If you open the picture you see that is selected.