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

Ashwin's inpatient stem cell transplant (Singapore)

by ashwin13 on Thu Nov 24, 2016 8:04 am

Hi all,

I'm a 66 year old man from Mumbai, India who was diagnosed with smoldering myeloma two years ago. I pulled on with close to normal monoclonal protein levels and light chains for a while, and thank God for those two years where I could check so many things off my list!

During those two years, I made lots of lifestyle changes. I became vegan; gave up most pro­cessed foods, sugar, and alcohol; increased exercise; reduced work stress; took up music and meditation for relaxation; etc. I like to think those helped delay my progression to symptomatic multiple myeloma. I still don't have any apparent manifestation of multiple myeloma except for some weight loss.

However, about four to five months ago, my serum free light chain ratio shot up and my hema­tologist prescribed MRI's, which showed some bone attrition. He gave me 4 rounds of Velcade, Rev­limid, and dexamethasone (VRD), which brought me to complete remission (CR). Never­the­less, I have a pesky 17p deletion that my doc warned me about and recommended an autologous stem cell transplant.

I am lucky to have international insurance, and opted to do my transplant in Singapore instead of India. We went and checked out the different hospitals and ultimately picked Mount Elizabeth Novena.

I have been reading people's posts here for a while, and they have given me information, tips, and mental strength, so I thought it's time for me to reciprocate and share my journey, in part to increase the information here in the forum for patients in Asia.

I arrived in Singapore about two weeks ago with my wife and daughter, and spent part of a week under­going preliminary tests and assessments. We then did 5 days of Neupogen shots (at our hotel), with thank­fully no side effects except minimal pain and fatigue. I took Claritin (loratadine) everyday, as advised on this forum.

On Monday this week I checked into the hospital and had my central line put in, since I ap­par­ently have smallish veins. This part was annoying but not too painful. I was then hooked up to the aphoresis machine for about 6 hours. Again, not painful, but so boring! Every time I moved, laughed, or even thought loudly (just kidding), the machine objected at me by beeping loudly, so I was effectively pinned down.

At the end of the first day we were in for a bit of a disappointment: they collected only 2.3 million cells, against a target of 10 million. They were hoping for a good collection since my counts and health otherwise are ok.

The doc said the numbers collected were only likely to decrease with each successive day, so he gave me an extra Neupogen shot that night and also a short of Mozobil (plerixafor). Luckily I had no diarrhea from the Mozobil, which many others have reported here. They also gave me a sedative to minimize how much I moved around to improve the collection efficiency!

The Mozobil clearly worked! On the second day I had a bumper harvest of 8 million, which meant I was cleared to go home :) I was glad to be unhooked and free to move about!

I now have about a week or so before I check back in for the melphalan and reinfusion (either December 2 or 5). I will share another post then!

ashwin13
When were you/they diagnosed?: Diagnosed two and half years ago
Age at diagnosis: 64

Re: Ashwin's inpatient stem cell transplant (Singapore)

by Beacon Staff on Thu Nov 24, 2016 10:04 am

Thank you, Ashwin, for volunteering to share your stem cell transplant experience with members of the Beacon community. We hope the transplant experience is a smooth one for you and your family.

For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:

"Useful links to existing forum discussions"

in the section labeled

"Stem Cell Transplant Experiences of Beacon Forum Members"

Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.

There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".

Beacon Staff

Re: Ashwin's inpatient stem cell transplant (Singapore)

by Nancy Shamanna on Thu Nov 24, 2016 6:14 pm

Thanks for sharing your story to date, Ashwin! Wishing you good luck on the stem cell trans­plant. It sounds like you are well prepared and have adopted a lifestyle to help you to cope with this also. We are fortunate to have an international community of people posting here, and reading, to learn from each other.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Ashwin's inpatient stem cell transplant (Singapore)

by TerryH on Tue Nov 29, 2016 10:39 am

Welcome to the forum, Ashwin. I hope the final preparations for the stem cell transplant have gone well, and that the rest of the process goes smoothly for you.

TerryH

Re: Ashwin's inpatient stem cell transplant (Singapore)

by chadsnow on Tue Nov 29, 2016 9:27 pm

Ashwin,

Welcome to our fun little club! We now have myeloma patients on four continents simultaneously documenting their transplant experiences! I'm in the U.S., Dean in the U.K., Barbara in South Africa, and now you in Asia! If we could only get an Aussie and a South American on board, we'd cover the globe!

I agree with you that documenting our experiences is invaluable to future myeloma patients as they decide whether to undergo a transplant and ultimately go through the experience. I'm now at Day +13 and feeling great. Days 3-7 I was really lethargic and a little sick, and days 8-10 were the sickest days of my life. Interestingly, another forum member, ACLinkBoca, said that days 3-5 were his worst. But since days 8-10 I've suddenly gotten better and even started working. It is a temporary inconvenience that hopefully adds many years to all of our lives.

chadsnow
Name: Chad Snow
Who do you know with myeloma?: myself
When were you/they diagnosed?: May 19, 2016
Age at diagnosis: 45

Re: Ashwin's inpatient stem cell transplant (Singapore)

by ashwin13 on Tue Nov 29, 2016 11:17 pm

Hi folks,

Thanks for your encouragement. Chad, it seems that the worst period of the transplant is over for you and things should only get better. Good to know that you've already started working! Inspires me to emulate your example. Wish you a great recovery.

I'm due to check into the hospital on Monday for my transplant and was told that I should be pre­pared for a 2 to 3 week isolation stay there. So I'm gathering and putting together things to help me pass time in 'medical prison'!

Meanwhile we continue to enjoy good weather here and make the most of the excellent and wide variety of cuisine that Singapore has to offer. Shall keep you posted when my treatment begins.

Ashwin

ashwin13
When were you/they diagnosed?: Diagnosed two and half years ago
Age at diagnosis: 64

Re: Ashwin's inpatient stem cell transplant (Singapore)

by Barbara SA on Wed Nov 30, 2016 2:31 am

Welcome Ashwin.

I like Chad's sense of humour about our little fun club. Isn't it weird how we can be separated by oceans and deserts but connected by a disease and treatment.

Dean and I are in-hospital candidates and Chad is an outpatient.

The isolation is nor so bad. I am allowed visitors, but I do restrict them as it gets tiring.

Keep an eye on our discussion threads and post your comments, etc, as anywhere you can.

Hang in there Ashwin.

Barbara SA
Name: Barbara SA
Who do you know with myeloma?: Myself
When were you/they diagnosed?: November 2015
Age at diagnosis: 55

Re: Ashwin's inpatient stem cell transplant (Singapore)

by ashwin13 on Sat Dec 10, 2016 10:41 pm

Hi Barbara, Chad, Dean and all,

Day -3 and -2

2 days on the melphalan drip for 30 mins- quite uneventful, and I didn't have any immediate reactions.

Day 0

They put me on Benadryl (diphenhydramine) during the transplant so I was kind of wafting in and out, not fully aware of what was happening. But when I woke up, the whole room smelled like a corn warehouse! Now I've this weird metallic taste along with a smell of corn all the time. I don't know whether the nurses are BS'ing me, but they claim that they can smell it at their desk outside!

Day 3

Blood counts have dropped below normal (WBC mainly) and doc said to expect further drop. Thank God, none of the dreaded side effects have kicked in yet, but the nurses have assured me that they will kick in soon. Energy levels and appetite is down, but my family is here and they keep me going with card games, TV shows (I went through Narcos in mere days!), and gossip. My doc has let them unhook me from the IV during the day after I assured him I would stay well-hydrated. With that I can freely move around the room, stretch, and in general feel less like a dog on leash! We are also refrigerating the Caphosol mouthwash, and that feels a bit better than if you would use it at room temperature.

Unfortunately, my doc was against outpatient treatment so like you and Dean, I too am stuck in the room. Chad, do tell us about your experience as outpatient.

Until then,

Ashwin

ashwin13
When were you/they diagnosed?: Diagnosed two and half years ago
Age at diagnosis: 64

Re: Ashwin's inpatient stem cell transplant (Singapore)

by Barbara SA on Sun Dec 11, 2016 4:38 am

Hi Ashwin,

Sounds like you tolerating the treatment well. I am so glad. They aren't lying about the smell of popcorn. I had that too. I couldn't smell it but others could. It does go away. Nice that you unleashed yourself. Mine wasn't for risk of infections. They were absolutely meticulous about that. Even changing my clothes was a feed through sleeves process and I was connected 24 hours a day. All meds went in IV and I even showered with the drip all connected. Now I'm discharged the PICC line is sealed and has heparin in to prevent clots at the connections. Then bandaged up. But I am free to move. I clingwrap the site when I shower.

I am going to be given polygam which is a gammaglobulin infusion obtained from healthy human plasma every 2 weeks for 6 sessions. This to help boost natural immunity. Hence keeping the PICC line in place.

My journey was pretty standard with minimal side effects. So I trust yours will be too.
Hopefully you will be home for Christmas too and can be with your family.

Hang on, Ashwin. The end is near.

Barbara SA
Name: Barbara SA
Who do you know with myeloma?: Myself
When were you/they diagnosed?: November 2015
Age at diagnosis: 55

Re: Ashwin's inpatient stem cell transplant (Singapore)

by Lasso on Sun Dec 18, 2016 5:42 pm

Hello all,

Well, Chad said he would like a South American, and here I am. I am in Panama and was diagnosed with multiple myeloma five years ago. I have been feeling I have been given a death sentence. My doc later told me it is smoldering myeloma, and I have been on observation ever since, with ups and downs.

I have been following the forum to be informed of what is in my future.

The only thing I have been given so far is supplements for the anemia and Zometa for the bones. I am so far scared to death about all this, but it is encouraging to see how others are coping with it.

God bless you all and good luck with your treatment.

Lasso

Lasso

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