[emily59]

I had my transplant at 59. The plan was that I’d stay w a family member when I was released. However the night before discharge this fell through. I told no one. Lol. I was afraid they’d make me stay! So, I was discharged to my home alone. I had a friend from out of town come in once a month to cook for me. She’d fill my freezer. Also had the house cleaned once a month. I was able to do basics, like wiping down counters, cleaning sinks, etc. but the rest I left for others to do. I had groceries delivered. So many protein shakes. It’s doable, just wasn’t fun. I did have transportation for appointments. That can also be arranged through the American cancer society. You may need to Uber until you feel well enough to drive. I was lucky. I had no complications. You can hire aides to come in as needed to cook, clean, change your port dressing. You need to flush it once a day, but that’s easy. I don’t recommend this situation at all, but we do what we have to. I was told prior to transplant that if I didn’t have a caretaker they would not do do the transplant. Found out later they would have helped locate nursing staff as needed. Hope it all works out for you.

[emily59]

It’s certainly not ideal to go through this without a caretaker, but it’s possible. I went through chemo and a transplant on my own at 60. If it becomes necessary you can talk to your doctor about having outside help from visiting nurses and aides.

[emily59]

Have you been started on Vidaza? That did wonders to improve my WBC, RBC, and platelets until I could have a transplant. It took 2-3 rounds, then things started to improve significantly. Many people are on it for years and do quite well without a transplant.

[emily59]

I had vidaza via injections and it was no biggie. I had them all done in my thighs since I had a lotta spare fat there. I declined shots in my stomach. Ugh. I had some in my arms at first but they were too sore after. My chub thighs finally came in handy.

I really hated having a port. It was placed while inpt for a SCT. It’s so hard to deal with in the shower. Trying to cover it and keep it dry when I just wanna relax in a nice warm shower. Not happening. I was THRILLED to have it removed around day 60.

[emily59]

Rose – You could try calling the American Cancer Society about getting rides to treatment. Here is the number — “Call to find a ride near you 1-800-227-2345”

People volunteer to drive patients.

Take care and good luck.

[emily59]

I had one without and it was horrible. Since then I’ve had 5 with sedation and had no pain. I will never not be sedated. You can likely find another place that will do what you want.

[emily59]

As long as they give you something for nausea in ADVANCE. They could give you oral meds that you take an hour prior, or they can give you an IV before the chemo injections.

I drove to/from all my appointments. I went to work approx. 4 days each of those weeks. By Day 7 I Was usually exhausted. I would definitely plan to stay home for the first couple days to see how you react.

My very first cycle I had nothing for nausea. I went right from my appointment to work. By 11:30a the vomiting started. It was baaaaad. But all the rest of the treatment days were OK since they gave me the right meds.

Hope it goes well for you.

[emily59]

I agree with Paul but I’d add talking to your doc about taking the zolfran ahead of time. I had one dose of vidaza w/o nausea meds and got VERY sick. They ended up giving me anti-nausea meds via IV.

You can get zolfran in a form that goes under your tongue and works really fast. I took it 30 min. before treatment and all the rest on the cycles went ok. I usually felt exhausted during treatment week and for 2 days following vidaz, then ok for the rest of the month.

During that week I would take day 1 off from work, then work the rest of the week. Thank heavens for zolfran.

[emily59]

As of 10am EST I am still getting notifications. I went into my account and changed the settings to NO. That is how it was always set.

• This reply was modified 5 years, 7 months ago by emily59.

[emily59]

I have been told to expect to be out of work for 12 months.

[emily59]

Take a look at page 20 of this newsletter……

https://www.mds-foundation.org/wp-content/uploads/2017/04/SpringSummer2017Newsletter.pdf

[emily59]

Everyone is different. I have had both. I much prefer conscious sedation. My last was just a few weeks ago. The nurse was so great with controlling the meds. There was literally no after effect. I felt clear headed in just a couple minutes. It was great. No discomfort at all other than the pinch from the first lidocaine stick.

My prior experience with the awake MBM was painful and unpleasant all around. Not doing that again.

[emily59]

Haider – You need to look at the link posted by the moderator which shows US states and international locations that specialize in MDS. Ask your local doctor for a referral to the nearest one. Local doctor SHOULD get you an appointment and send your slides and all related info. You will go to appointment at the great hospital. They will look over the date and tell you a good treatment plan. I’m not medical so I don’t know if you (or your dad…I can’t recall) would be in a “wait and watch” category, or might need some form of chemo, or what. That’s the doctors are for. Good luck.

[emily59]

Rich – Above the moderator suggests you call Dr. Lewis Silverman. That’s what I would do. I just googled him and found his contact info. I would call and tell them that you have been waiting 4 months for a final diagnosis of MDS and treatment plan. That’s way too long. Say that you would like to meet with him or speak to him for assistance. Perhaps they will give you an appointment with him or someone on his treatment team. Here is his contact info:

The Mount Sinai Hospital
212-241-6756

Good luck.

[emily59]

Thank you! How did you use your Echo Dot? I don’t have one but if it seems handy enough, heck I’m spending retirement funds like there’s no tomorrow….lol.

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