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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by sunshne954 on Mon Dec 15, 2014 5:25 pm

Leealli,

Reading your postings about your mom's transplant brought back so many memories from my own transplant in June of 2010. I had mine done at Moffitt Cancer Center in Tampa FL. I guess that most transplants are pretty much the same. I am amazed at the drama of the stem cell delivery and preparation, when the entire procedure only takes less than 15 minutes. It was kind of anti-climatic for me.

My best wishes to your mom for a speedy recovery from the ASCT and welcome her into the new normal club that myeloma patients experience.

Patty

sunshne954

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Mon Dec 15, 2014 9:27 pm

Day 3

Yesterday I expressed some sadness in my posting about how fast my Mom is experiencing symptoms to the chemo. When the doctor came by, he reminded us about my Mom’s age. While he considers her a ‘young’ 70, she is going to have more happen to her in this process than if she was younger. It was good to be reminded of this.

The nausea seems to be pretty constant so far. Last night she tried more Zofran along with a scopalamine (hyoscine) patch. People on cruise ships sometimes use this to avoid sea sickness. It carries the side effects of the dry mouth and maybe some loopy-ness There are a lot of choices of things to try and there will be some experimenting. She is very cognizant of the importance of being active and many of the anti-nausea drugs make her sleepy. In the front of her mind is “1 day in bed, 2 days in rehab”. Also the constant reminder that they do not want her in bed unless she is sleeping. I know that she spent most of the day wanting to put on her pajamas and crawl into bed.

For dinner last night, she had another of the protein drinks and some tea. The doctor and nurses aren’t concerned that she is not taking in many calories. All of this is to be expected.

I came in this morning and she was still in bed but had managed to get down a bowl of cereal. She is drinking a good bit of ginger ale and there are so many pills to take that she gets a lot of water. She isn’t getting a lot of constant sleep due to all the interruptions that are around the clock.

Even though she didn’t want too, she got out of bed, got dressed, and we did 10 laps. She said that the nausea wasn’t any worse if she was in bed or up walking. The PT was on the floor and walked with us a bit, encouraging her to spread out the exercises throughout the day.

Her over night blood work showed everything holding pretty steady.

Then, I had to leave. I live 350 miles [565 km] away and have to work for the rest of this week. I work as an independent contractor in what I do and, since her diagnosis, have limited the work I take as much as possible. Originally, I had a job that would have had me away for 3 ½ months during this time. I was able to back out of it once she was diagnosed. I can’t imagine being away for all of this. Leaving today was hard; especially with her feeling so poorly and because I am enjoying sharing what I am learning with all of you.

My Dad reports she removed the scopolamine patch because she didn’t like the dry mouth that it caused. At lunch she had another protein drink and then was started on a “baby” dose of Ativan. This seems to have helped. There is a new doctor in the rotation today, so that is an adjustment.

Then my Dad had to leave. He and my mom live 100 miles away and he had to go home for his own doctor’s appointment and to collect the mail. My brother drove in from Ohio for the next few days. It’s a family affair.

This certainly is a challenge as an out-of-towner. Many others on the floor are doing the same thing. Hotels are hard to find – Buffalo seems to be a busy city and the hotels are often full. There are long waiting lists for the housing available for Roswell patients and their families. We had to change hotels today because the one we have been in since Wednesday is booked. We are being creative and getting into a routine.

My brother reports that she is ready for bed; showered, in bed, and having night meds, in­clud­ing more Ativan. When asked how she is, she responds, “She is a little ‘off’.”

Well. I would think so.

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Leealli
Name: Allison
Who do you know with myeloma?: My Mom
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Cheryl G on Mon Dec 15, 2014 11:43 pm

Thank you for all your postings, Allison. I've been lurking in the background, reading each of the news ones as you've posted them, but I thought I would say hello today and let you know what a great job I think you're doing.

When I got to the part of your most recent posting where you said that you had to leave your mom today, and then your dad had to leave as well, I thought to myself "Oh NO! Her mom is all alone." So I was so glad to read just a sentence or two later that your brother is with your mom.

Best wishes to your mom and all of your family.

Cheryl G

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by CabinGirl on Tue Dec 16, 2014 12:26 pm

Allison,

Thank you for taking the time to blog your Mom's transplant experience. I am reading each and every word, as I will be going through my autologous stem cell transplant in the next 4 - 6 weeks at Mayo in Rochester, MN.

I have been told from the myeloma specialist at Mayo that my transplant will be on an outpatient basis. The patient reports to the transplant center each day and remains there for most of the day and then goes back to their lodging at night. I am very nervous about trying this as an outpatient, but my Mayo oncologist feels I should do just fine. Lodging around Mayo is quite expensive, so I will have out-of-pocket expenses that exceed my insurance company's per diem allowance -- but that is reality these days, I guess.

Please continue with your detailed blog as it is very informative and helpful for so many of us. I will keep your Mother in my thoughts and prayers as she continues on her recovery.

CabinGirl
Who do you know with myeloma?: Self
When were you/they diagnosed?: Sept. 2014
Age at diagnosis: 57

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Tue Dec 16, 2014 9:38 pm

Day 4

In 27 hours I traveled from Buffalo to New Jersey and am now in central California. My brother is still with my Mom. And, it has been an interesting day for my Mom.

The Ativan seems to be helping. And though she vomited this morning and had some diarrhea, she has eaten something at each meal: Cereal, juice and tea for breakfast, chicken noodle soup and juice for lunch, and tomato soup for dinner. She says she has no appetite but is getting in a little food at each meal. Her white blood cell count is down to 2.10 from 3.12 on day 2. When I spoke with her this evening she had done her mile and most of her other exercises. She says my brother is a task master!

Now for the fun stuff: This morning, a music group came by and set up in the hallway – mellophones and a tuba playing Christmas music. Made my Mom teary. Then, this afternoon, a dance group came by and handed out $50 gift cards to all of the patients on the floor as part of a fundraiser they did to purchase these cards. That got my Mom all teary again.

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Now, just to top it all off: Despite everything, my Mom is considered to be in the best shape on the floor and an allo patient needs a room starting tomorrow. This floor is a floor with specially trained nurses. But there are 2 more units that are also HEPA-filtered and have nurses with slightly less experience but with the training to deal with stem cell patients. She is being moved to one of these.

Of course, this means a complete packing of the room, which my brother had just finished decorating with drawings from his kids. And all of the suitcases are in my Dad’s car. (He is away for the day). I am very glad that my brother is there to help with all of this. They have been packed and ready since 3 p.m. I spoke with her at 6:30 p.m. Eastern Time and she was still there amongst all of her things waiting.

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Usually, she is in bed at this time. At 7:15 p.m. my brother saw the folks moving out of the room that my Mom is moving IN too. And that patient had to wait for the room that he is moving too. Quite a process. We had been told that this was a possibility at some point if she was doing well. But it came as a surprise, nonetheless.

A pretty busy day for Day 4. With as lousy as she is feeling, there are others not doing as well who are just a day plus or minus from her.

(Photos compliments of my brother)

Leealli
Name: Allison
Who do you know with myeloma?: My Mom
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Tue Dec 16, 2014 9:44 pm

Cheryl, Hi and thank you. I am finding doing this quite therapeutic and a lot of it is things I was searching for when I was researching. After today, it is clear that someone has to be in town with her at all times - Imagine her trying to pack all that! The nurses would have helped, but it's not the same.

Cabin Girl: There are a few people on this site who have had outpatient transplants and have a thread about it. Look at the "Useful links to existing discussions" that the Beacon Staff have at the top of the list of discussions in this section of the forum. At the bottom of that posting are a list of 'stem cell transplants' written by people while they were experiencing it. Two were outpatient.

The financial aspect of all this is a topic onto itself. On top of the meds and the copays and the travel and the missed work, adding lodging on top of it can make it overwhelming. Make use of the help provided by Mayo by the social workers and other programs that they have. They can take away some of the stress from you.

Leealli
Name: Allison
Who do you know with myeloma?: My Mom
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Mister Dana on Wed Dec 17, 2014 2:13 am

CabinGirl

You posted "I will be going through my autologous stem cell transplant in the next 4 - 6 weeks at Mayo in Rochester, MN." Note that at the top of this part of the forum (Treatments & Side Effects) is a post called Useful Links to Existing Discussions. Click on that and scroll down until you see the people who have written up their SCT stories. My story of recent outpatient auto SCT at Mayo is one of them.

I hope you have smooth sailing as I did. If you have any questions, post them or send me a PM (private message). If you are reading this in the forum, sign in first and just click on the PM icon at the left. I'd encourage you to keep reading Allison's discussion thread here, and start one of your own when you arrive at Mayo. I'll be watching to see how you are doing, and hoping for the best for you, as I do for Allison's mother.

Mister Dana

Mister Dana
Name: Mister Dana
Who do you know with myeloma?: Me
When were you/they diagnosed?: December 2013
Age at diagnosis: 66

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Thu Dec 18, 2014 1:25 am

Day 5

G-CSF (granulocyte-colony stimulating factor) day. And each day will be another G-CSF day until her counts come back up. The purpose to to stimulate stem cell growth. Just as was done leading up to the stem cell collection. This was planned. It is in injection form, meaning it's added to the daily injection of the blood thinner. Her white blood cell count over night was 0.83 (2.10 yesterday).

The new room is fine. New unit, new staff. As my Dad says, “A bit of change from the somewhat familiar, but no big deal in the overall scheme of things.” The staff-to-patient ratio is the same. This wing seem basically to be an extension of the other, but maybe a slight step down in the level of how sick the patients are.

The room is bigger, giving everyone more room to move around.

My brother, who started the day with her, reported that she had an uneventful night but woke up with diarrhea. Imodium is now being given every 6 hours and can change to “as needed” if necessary. The nausea was present, but she didn’t feel like she was going to be sick. By the end of the day, she was feeling better.

She is still eating something at each meal and I got two different photos today of her walking her laps - one with her sister and another time with my Dad.

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My Dad tells me that my Mom got to take a shower without her IV pole. In this wing, if no meds are being given, it gets disconnected. That must have felt very freeing. The CVL (central venous line) gets covered with plastic or some sort of bandage – different nurses do it differently.

She had a pretty good dinner of soup, apple juice, ice cream and tea. She was very tired after last night’s late night because of the room move, so went to bed early.

Roswell certainly knows how to celebrate Christmas. The lobby has a rotation of groups performing: piano players, small groups, an entire orchestra, and choirs!

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This group took 30 minutes to get organized but apparently they were quite good!
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By the way, I hear that Tom Brokaw talked about his multiple myeloma on David Letterman tonight. I am on the West Coast and will be in bed before it is on. Anyone catch it?

Leealli
Name: Allison
Who do you know with myeloma?: My Mom
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Fri Dec 19, 2014 1:04 am

Day 6

The effect of my mom’s lowering immune system is hitting. The doctor was in this morning and said that things were on course. The diarrhea hasn’t returned since yesterday. She is still getting Ativan, which seems to make the presence of nausea bearable for her. She was able to eat cereal, a banana, and juice for breakfast, which is more than she has had in 3 days.

Unfortunately, she has developed a bit of mucositis in her mouth despite the 4-times-a-day mouth rinse that she gets after every meal and at night. Now, she has something she uses before each meal -- a concoction called BMX, consisting of Benadryl (diphenhydramine), Maalox (aluminum hydroxide and magnesium hydroxide), and Xylocaine (lidocaine) -- which she swallows. The Xylocaine has a nice numbing effect.

Mucositis is a breaking down of the epithelial cells in the GI tract and can happen all the way down. It is most common in the mouth and can really cause problems with taking in nutrition. It can cause a lot of problems - this is why there is such an emphasis on mouth care. Did I explain that right?

Her white blood cell count was 0.50 over night and she is feeling the effects. Still – she is getting her laps in.

She continues with the daily growth factor and blood thinner injections along with an anti- fungal, an antibiotic, Acyclovir (anti-shingles), Actigall (ursodeoxycholic acid) (protect liver) and lactobacillus pills. She also has had a bit of neuropathy since the end of her 2nd cycle of chemo (RVD) and since she was admitted to Roswell gets gabapentin (Neurontin) twice a day.

I only heard from my Dad a few times today, so I don’t know as much. I am curious about life on the new wing and observing other things that are going on.

For you caregivers and friends and family out there: My Aunt and her daughter sent my mom a gift bag with lots of little wrapped gifts and cards to be opened each day. What a great idea! It’s creative and little things like this can help a patient get through each day.

Tomorrow after work I travel back to the East Coast. If I am not able to post, I will get caught up on Saturday.

- Allison

Leealli
Name: Allison
Who do you know with myeloma?: My Mom
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Fri Dec 19, 2014 9:27 pm

Day 7With the white cell count at less than 0.1 and hemoglobin of 8.8, my Mom is really dragging today. Also, the mucositis has worsened and her throat is really bothering her. As many medications as possible have been switched to IV since swallowing is painful. She will still have to get down a few meds that are only available in pill form The dietitian wants her to have two protein drinks a day in order to keep up with her nutrition to avoid having to put her on IV nutrition. The irony, of course, is that while one part is trying to eliminate needing to swallow by switching meds to IV, the other needs her to swallow more to get nutrition. The doctor came in early and got her started right away on something for the pain – Dilaudid (hydromorphone). It makes her sleepy and she napped after each dose today. It is likely that tomorrow she will go to a pump delivery to provide a more consistent level of pain control.With everything going on, my mom still got in 11 laps today. Good for her. All this is reported through my father. I am currently sitting in an airport in California waiting on my long delayed flight. I will be back in Buffalo on Sunday and am eager to get more details and to continue sharing them. I found the segment of Tom Brokaw talking to David Letterman about his multiple myeloma diagnosis (see below). He was diagnosed in August and made a point of saying he doesn’t want to talk too much about it. He did highlight how multiple myeloma impacts the whole family. It requires a lot of resources and support. He stressed how lucky he was to have that and realizes that not everyone does. It’s a good point and bears mentioning.We are lucky to have this website and all the resources it provides.

Leealli
Name: Allison
Who do you know with myeloma?: My Mom
When were you/they diagnosed?: July 2014
Age at diagnosis: 70

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