[Sheryll]

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

by Sheryll on Sat Dec 20, 2014 11:41 am

Hello, and thank you for these informative posts!

My husband was diagnosed with IgA kappa in early March. He is just completing his 14th round of RVD induction therapy and will hopefully start the ASCT process by the end of next month. It depends on the next bone marrow biopsy. The first one (in March) showed 95% monoclonal involvement, and his blood test result for IgA was over 3800. It has seemed like a very long road, trying to get his numbers where they want them in order to schedule the ASCT.

Now that the time is drawing near, one of the concerns he has mentioned is the development of mucositis. Could you tell us the name of the mouth rinse your mother was using initially?

I'm finding your posts to be very helpful, although his transplant will be as an outpatient in Seattle at the Fred Hutchinson / Seattle Cancer Care Alliance (SCCA) facility. I admit we have some apprehension about the whole process, especially since it is on the other side of the state, and we will have to temporarily move over there. Lots of other patients have done this, though, so I'm sure we will be able to manage it also.

[Cheryl G]

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

by Cheryl G on Sat Dec 20, 2014 2:13 pm

Hi Sheryll,

Allison mentioned in this posting that the mouth rinse her mother is getting is "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."

I hope your husband's stem cell transplant goes well. Good luck!

[Leealli]

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

by Leealli on Sat Dec 20, 2014 5:32 pm

Sheryll:

The BMX was given to her after she developed mucositis and, once that wasn't enough, the Dilaudid was added. From her first day in the hospital she has been given a mouth rinse for after every meal and at night. I need to get the exact ingredients of it for you. It comes from the pharmacy and is in two tubes which she mixes into a cup and swishes for 1 minute before spitting it out.

In preparation for all this, my mom found a recipe online for a preventative mix – baking soda and salt. I will ask her what that was. I have heard this from other patients too. She brought a bag of this with her not knowing that the pharmacy would provide something. Once her platelets come back up, the mucositis should subside. So far - it's the worst thing of everything.

[Sheryll]

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

by Sheryll on Sat Dec 20, 2014 6:31 pm

Thanks, Cheryl and Leealli, for your quick responses. Leealli, I will keep your Mom in my prayers, that she will soon have relief from this painful condition. I hope the rest of her recovery will be uneventful!

[Leealli]

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

by Leealli on Sat Dec 20, 2014 10:52 pm

Day 8

This was hard day to be hearing about things second-hand.

This morning my Mom was having a lot of problems swallowing due to the pain from the mucositis. Her white blood cell count is still less than 0.10 (normal is 3.5-10.5), and her platelets are low at 36 (normal is 150-450). At noon she started receiving her Dilaudid via PCA (patient controlled analgesia) set at 0.25 mg per hour, which is the equivalent of receiving it 4 times a day. This gives her a constant base level at all times and she can give herself an extra push which delivers 0.25 mg. This should help her to eat and to be able to swallow her pills. The nurses check her vitals even more frequently now.

The mucositis should resolve once her white blood cells count starts to go up again. I was just reviewing my pages and pages of notes from all the previous meetings we had leading up to this. The doctor said that there is an increase of GI issues in older patients tending towards a longer hospital stay and the fact that almost everyone gets a fever – which they treat as a bacterial infection. We haven’t crossed that bridge yet.

I see an error I made in a previous post regarding the HEPA filters in the rooms and hallways – in the rooms there are 10 exchanges per hour and 4 in the hallway. I short-changed this. Also, for those keeping track, the blood thinner is Lovenox (enoxaparin) (which I still find interesting, seeing as her platelets are so low)

I talked to my Dad in the early evening and he sounded a little down. He said my Mom is sort of always dozing now due to the Dilaudid. I don’t think she got much activity today. She had ordered some soup and tea and was going to try to get that down.

I have been reading about many of you preparing for out of town transplants or, even harder, outpatient transplants even though from out-of-town. There is so much else that goes on outside of the confines of the patient’s room that is a part of this whole picture.

We have been playing a bit of ‘housing roulette” in Buffalo, finding the hotels to be fully booked and long wait lists for the financially assisted or free offerings in the area for the families of patients at Roswell. After two weeks in a hotel, yesterday my Dad moved into Hope Lodge. This is residence run by the cancer society that is completely free for it’s guests. I will be joining him there tomorrow. After my mom is discharged, local housing will have to be found. Hope Lodge has four rooms with private bathrooms available for just these instance. She is on a long waiting list right now.

Tomorrow I will post from Buffalo – right were I really want to be.

[Leealli]

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

by Leealli on Sun Dec 21, 2014 10:33 pm

Day 9

I got to hug my Mom today!

She was very happy to see me, though the drugs are making her pretty loopy and very, very sleepy.

Her new room is two times the size of her original room, as is her bathroom. It is certainly much more comfortable for those of us visiting. My brother left behind lots of drawings and decorations from his 3 boys, which are hung up on the walls.

I would say my mom has hit bottom. She feels awful. Her throat hurts and she can’t keep her eyes open due to the steady dose of pain medication. Her IV pole is much more impressive looking now, with many more bags hanging off of it. Her blood pressure is running on the low side, which could be from any number of things.

On the upside, she didn’t have any diarrhea today, and her electrolytes are holding. Her WBC went from less than 0.10 to 0.12 today. It was expected that between days 8 and 10 she would hit her low point and start back up. Her platelets dropped to 11 from yesterday’s 36.

I have more photos to share and things to say, but my Dad and I are sharing a room at Hope Lodge, and he is ready to turn out the lights. I will get caught up tomorrow.

I am happy to be back here.

[Ian]

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

by Ian on Mon Dec 22, 2014 7:15 am

So glad you were able to see your mom again yesterday, Allison, and thank you for the great job you are doing keeping all of us updated on how she is doing. I hope your mother starts to feel better soon and that the worst part of the transplant process is behind her.

[Leealli]

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

by Leealli on Mon Dec 22, 2014 11:03 pm

Day 10

Tough day.

I could tell as soon as I came in that my Mom was very uncomfortable. She is having a lot of diarrhea, and the pain from the mucositis has made it impossible to eat or drink.

She is a bit altered – from the Dilaudid. She knows where she is and what is happening and who are we are, but she is unable to do anything and wants only to sleep. We have to repeat things to her several times. It’s somewhat like caring for a toddler (don’t tell her I said that). The nurse administrator was in about mid-morning to talk about the weekend nurse’s concern for how she was reacting to the Dilaudid, and that they were going to speak with the doctor about making a change. I was glad to hear this.

At noon, she was started on fentanyl via her IV. She is getting a constant low dose with the pump option as needed. So far she has not used the pump. But, then again, she has also not eaten anything.

Without going into too much detail, there has been a lot of laundry - just today. There is a bit of reversal of rolls going on here.

It is my sincere hope that she doesn’t remember any of these last few days. In the lead up to all of this, the doctor said that GI issues are worse in older patients.

Due to her low platelets, she can no longer floss or brush her teeth with a toothbrush due to the risk of bleeding, which in turn, can become an infection. We were given foam sponge type thing on a stick. This, combined with the 4 times a day Caphosol and Biotene rinses make up her mouth care. Until her platelets get above 40,000, she will not use a toothbrush. It is possible that this could still be the case even after she is discharged.

The swish & Spit- 4 x a day since she was admitted.

Caphasol.jpg (77.72 KiB) Viewed 442 times

Tooth swab.jpg (44.88 KiB) Viewed 442 times

Today's Blood Counts

WBC: 0.27 (still going up)
Hemoglobin: 7.6 (low – get blood when lower than 8.0)
Platelets: 6 (very low)

Her blood pressure continues to be on the low side and she had to have platelets infused this morning and a unit of blood this afternoon.

She is trying some different anti-diarrhea meds: Lomotil (atorphine and diphenozylate) since the Imodium alone isn’t working. She continues to be on Zofran and this morning had some potassium. She gets vitamin K three times a week and all the other meds she has been on are still being administered.

Despite all of this, she did get 1 lap in this morning. She is a different person from when I left, when she was walking unassisted. Now she makes full use of the IV pole and gives it her best shuffle. The PT encouraged her to sit in the chair, even if she is sleeping, saying that even that is better than being in the bed. She was able to manage that for only a short time. She also is doing her spirometry to keep her lungs strong.

There are still sparks in there though – even though her brain is working a little slowly, she still shows signs of a sense of humor.

My Dad left this afternoon to go home to get some bills paid, check the mail, and with a list of things to bring back. I also hope he can get a good night’s sleep in his own bed.

It is as active as ever in here today - pretty much non-stop activity, with lots of nurse visits, extra vitals checks, housekeeping, garbage emptying, needle holder replacements, three cups of tea delivered (still sitting here full), PT, 2 visits from the nurse administrator and the doctor. The doctor is new to us and will be on the service all week. She had the dressing changed that is over her CVL. They are very careful, having both the patient and the nurse wearing masks when this is done.

Bigger room

New Room.jpg (42.46 KiB) Viewed 434 times

I have to talk a little about Hope Lodge. This is a beautiful old Victorian style home built in 1890, renovated for the purpose of free housing for caregivers and for patients in and out of Roswell who live over 40 miles away. There are 11 guestrooms that share baths and 4 rooms with private baths. The kitchen has a huge freezer, 4 refrigerators, 2 full sized ovens, 2 dishwasher, 2 microwaves, 2 sinks and is fully appointed. There is a laundry room, parking, and a nice outdoor space. There is also transportation to and from Roswell.

This morning, my dad and I were having breakfast when someone came in with bags of bagels and fresh coffee. This was not a patient or a family member or a past resident – just someone who knows what Hope Lodge is and wanted to give a little something. My point is: Sometimes there is support there that you don’t even know about.

[Leealli]

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

by Leealli on Tue Dec 23, 2014 6:40 pm

Day 11

At least it’s not Day 10 anymore.

Just because Day 10 wanted to hold on as long as possible, my mom spent the night going back and forth to the bathroom and throwing up her meds. To add insult to injury, she couldn’t keep her anti-diarrhea meds down.

When I first came in this morning, she was sleeping, hadn’t had any breakfast, and the plastic bag that I had left in the bathroom was full of items that needed to be washed. I was ready for that, with my aunt bringing me bleach and some stain remover options last night. (Add these to your list!)

She was on potassium and magnesium again, but the good news is that her counts are going up. No platelet transfusions will be needed today . However, she is very nauseated. Since the pain meds started over the weekend, she had only been on Zofran. Now, she is also receiving a low dose of Ativan, which worked for her before.

Todays Blood Counts.jpg (42.2 KiB) Viewed 439 times

I was a little frustrated this morning, feeling like the pain meds weren’t helping much and just making her sleepy, and she still hasn’t eaten and hadn’t gotten her morning meds down. Then, there was a turnaround: Late morning, she asked for the cup of tea that had been delivered earlier. She sat up in bed, drank it, swallowed most of her pills and meds, and listened to me read the cards that had been delivered here over the last few days. She was alert for about an hour – just two days ago she would fall asleep mid-word.

Her blood pressure is back to normal. I observed, that when she swallows, the face she makes is much less than it was the last few days. She says that the first drink hurts, but then it’s better. And there is no pain except when she swallows. This is definitely progress. She has a loose cough, which often stops her from drinking and will make her throw up sometimes. She is sipping on some ginger ale, which is at least some fluid.

However, after two days of not eating, it’s time for TPN (Total Parenteral Nutrition). This is nutrition given through IV of required nutrients. This will start at 6 pm tonight. I expect that she won’t need this for too many days. If her throat continues to feel better, she will be able to eat.

In the afternoon, she was up to do mouth care and even combed her hair. This is the mom I know. I should note, though, that the comb as full of hair afterwards. This is the first sign we have seen of the hair loss that is to come.

My dad came back today laden with Christmas cards from home. He got her to do her spirometry and she spent the afternoon napping in the recliner.

The PT came in and was pleased to see her in the chair, reiterating that even the chair is better than the bed. This is the first day my mom hasn’t been able to do at least a lap. The PT said that what we are seeing is not out of the ordinary – a few days of “in bed” sometimes happens, and that, with how much the mucositis hurts, maybe it’s best she sleeps through it.

Ultimately, my mom spent most of the day sleeping, with a few trips to the bathroom and a nice chunk of time in the recliner. She stated her intent to take a shower tonight.

I am starting to meet others who are staying at Hope Lodge. There is a young man in his 20's on Day 31, a woman whose husband is having an allogeneic transplant today, and others in all different stages of the process. It's a very supportive place. It's an easy walk of about 20 minutes to Roswell. I enjoyed getting a bit of fresh air this morning. The shuttle is the Roswell security vehicles, which will come pick you up or take you back for appointments or visiting.

Hope Lodge.jpg (76.99 KiB) Viewed 426 times

[mikeb]

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

by mikeb on Tue Dec 23, 2014 11:06 pm

Hi Allison,

Thanks for your continuing posts about how your Mom is doing. I'm sorry that she has been going through such a rough time of it. But your Day 11 post was encouraging to me. With her counts starting to go up and her starting to be a bit more awake, I bet that she is turning the corner and will continue to improve day by day.

Thanks also for mentioning Hope Lodge. Following my discharge from the hospital after my SCT, I stayed at the Hope Lodge in New York City for a week or so because my medical team wanted me closer to them than I would have been at home (1.5 - 2 hours by train & subway from the hospital). I cannot say enough about Hope Lodge! It is an amazing place. And I think in some cases it is literally a lifesaver for some people.

I met people from all over the world staying at our Hope Lodge, people with some very difficult cancer cases, who came to NYC to get the most expert treatment. Because the cost of hotels and other lodging in the NYC area is so high, I think lots of these people would not have been able to afford to be treated in NYC if it weren't for the free lodging at Hope Lodge. So, in that sense, it really could be a lifesaver for some people. The American Cancer Society deserves a lot of thanks for providing facilities like the Hope Lodge in Buffalo and the Hope Lodge in NYC.

Sending good Christmas Eve Eve wishes to you and your Mom.
Mike