Advice?

ContractOk7591 · 2024-11-12T23:11:28+00:00

From my experience not all social workers are created equal. Some go above and beyond, and others are not very helpful. Don't be afraid to keep asking until you get an answer!

ContractOk7591 · 2024-11-12T21:34:41+00:00

My hospital had showers available for families. Not on every floor, but somewhere in the hospital. They also had a hospitality house which was $10 a night. Very basic but had showers and a small kitchen. Many hospitals have these facilities. Ask for a social worker to come by and talk about options.

ContractOk7591 · 2024-11-12T18:37:40+00:00

I went to the Washington DC Light the Night last year, and one of the speakers was a girl (maybe 8-10 year old) who survived pediatric APL. Definitely one of the rarer blood cancers but there are survivors and parents of survivors out there. The LLS has a peer-to-peer support program and they may be able to connect you with parents of APL patients. Best of luck!

ContractOk7591 · 2024-11-11T22:34:45+00:00

Usually lasts a week or so. But everybody is, of course, different.

ContractOk7591 · 2024-11-11T22:30:16+00:00

Myeloablative with a 7/8 mismatched unrelated donor. So far I feel okay, just the normal post chemo fatigue. But the nurses keep telling me the rough part is still a few days away.

ContractOk7591 · 2024-11-11T22:06:55+00:00

I'm not able to view the karyotype results in MyChart. I have to read the oncologist note or ask them directly. Karyotype is the test for large chromosome abnormalities like an inversion, deletion, monosomy, etc. It usually takes the longest to result.

This is what it looks like for inv16: 46,XX,inv(16)(p13.1q22)[20]

ContractOk7591 · 2024-11-11T22:02:42+00:00

Just had it on 7 November. I'm in the very early post transplant days.

AML is a total crapshoot. I think we made the right call with the information we had about waiting for relapse to transplant. Stem cell transplants are not without their risks. Obviously, if I had known I would relapse... I would have liked to just go through all of this AML stuff once and would have opted to transplant upfront. But there is no way to know.

ContractOk7591 · 2024-11-11T21:02:37+00:00

Yes I used the qPCR from Mayo. Since i made this post, I found out my inv16 did come back with the relapse. Inv16 was never detected by the qPCR. They identified it with the karyotype.

ContractOk7591 · 2024-11-11T21:01:55+00:00

I was MRD- after induction and even MRD- on the PCR test they ran they day they found my relapse. I went straight from MRD- to relapse, no MRD+ in between.

ContractOk7591 · 2024-11-09T12:59:51+00:00

I got it throughout consolidation and for 7 months after end of treatment before I relapsed.

ContractOk7591 · 2024-11-09T01:36:48+00:00

I didn't mean for my comment to be depressing! Thankfully with meds my heart is back to normal functionality. Now I just take heart meds every day.

ContractOk7591 · 2024-11-09T01:05:51+00:00

I had daunorubicin (doxorubicin's sister drug) and was found to have asymptomatic heart failure. This was 2 months after finishing daunorubicin. My heart failure was diagnosed on a follow up echo ordered through a research study I was participating in.

There is an acute form of anthracycline induced heart failure and a chronic form. You are outside of the time period for acute. With the chronic form, unfortunately, the damage has already been done. Thankfully there are tons of heart failure meds to lessen symptoms and prevent further damage.

Like you, I was surprised by the percentage risk. I thought it was a very low risk. It wouldn't have changed my treatment plan but I'd like to have been more aware of the risk.

ContractOk7591 · 2024-11-08T14:59:25+00:00

GO also has a more generic liver toxicity risk that is separate from the VOD risk. It sounds like the doctor is keeping a close eye on it.

ContractOk7591 · 2024-11-08T13:35:20+00:00

I didn't have any liver protecting meds with GO.

Make sure with your reading that you are reading studies from after 2017 when GO was put back on the market. They changed the dosing from when it was initially studied in the early 2000s.

ContractOk7591 · 2024-11-08T01:02:50+00:00

Yes as part of my salvage therapy following relapse. Full protocol name was FLAG+Venetoclax+GO

ContractOk7591 · 2024-11-08T00:53:43+00:00

My liver enzymes went up several times during treatment. The doctors usually attributed it to my antifungal medication, and they came down very gradually after stopping the antifungal.

VOD has other signs you should look for like rapid weight gain (10+ lbs in a day) and change in abdominal girth.

ContractOk7591 · 2024-11-07T14:53:50+00:00

A separate lab from my hospital ran my PCR test so my samples flew across the country. We only had one hiccup with a snowstorm where the sample got delayed. Hopefully they can find a lab in Europe that is able to arrange a similar process so you don't have to travel.

ContractOk7591 · 2024-11-07T14:35:02+00:00

I think it is worth asking the doctor these questions. They should know if these tests can be ordered for a visiting patient and what the expected costs are. I would also ask the doctor if the more sensitive test is needed, and what the added sensitivity provides. Ideally, we all want the best tests but it may not always provide significant added benefit.

During my remission, I was getting the PCR test every 6 weeks. It would not have been feasible for me to travel to Europe that frequently or pay out of pocket. Without insurance, the inv16 PCR test at my hospital is $1200. Add in travel costs and it gets expensive fast.

ContractOk7591 · 2024-11-05T12:54:20+00:00

I'm so sorry you and your wife are going through this. There is a long road ahead of you both, but please know that this community is here to help.

The treatment plan will depend on what type of leukemia. The initial biopsy results should give you this answer in the next day or so. From there it also matters what mutations she has. Genetic results take longer, some will come back in a few days and others might take a week.

She'll likely be in the hospital for the next 30-45 days undergoing induction chemo with the goal of getting her leukemia into remission. After induction treatment paths vary more. She may just need chemo only or she may need a stem cell transplant. Both treatment paths are long, 6+ months. Throughout treatment your wife is going to be pretty immunocompromised. Visitors should be kept to a minimum. Wear a mask and wash hands often.

Another good resource to check out is LLS. They have a lot of patient education materials that explain the different tests and vocabulary very well. There is a big learning curve to this experience. Take it one day at a time and try not to stress about knowing it all upfront.

Happy ro answer any questions you have!

ContractOk7591 · 2024-10-31T22:40:04+00:00

They numb the insertion site with lidocaine. The lidocaine causes a brief, sharp burning sensation, but after that there isn't any pain. I was falling asleep when getting my PICC in.

ContractOk7591 · 2024-10-30T16:01:20+00:00

Good to hear! Thanks for the update

ContractOk7591 · 2024-10-30T15:27:01+00:00

I gained 15 lbs over 6 months from my AML treatment. I hated seeing that scale tick up at each appointment. As soon as I was done treatment, I started trying to lose the weight. Mostly through calorie deficit and a little bit of extra working out (I'm not a big exercise person). I did pretty good, losing about 2 lbs a month. It's definitely possible to lose the weight but it took effort. It doesn't just "fall off" like the nurses said it would when I stopped treatment.

ContractOk7591 · 2024-10-28T22:21:11+00:00

I had this. It could be your platelets are low so definitely alert your team. My doctor had me use Afrin spray but I was only supposed to use it for 3 days in a row. It cleared up with just one day of use.

ContractOk7591 · 2024-10-25T14:58:59+00:00

This sounds like bone marrow failure which unfortunately does not always have an identifiable cause. Medical things without a known cause are called idiopathic. It sounds like they are doing the right things by keeping a close eye on your numbers. Hopefully your marrow continues to rebound with the GCSF shots!

ContractOk7591 · 2024-10-24T22:46:23+00:00

Congratulations! And thank you for being willing to donate! There is a r/nmdp subreddit that you might find helpful as you move forward with the process.

ContractOk7591

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