[Melpen]

Going to SCT - best tip or advice?

by Melpen on Wed Dec 17, 2014 7:10 pm

To those who have answered my past posts: johanna, MikeB, Dr. Voorhees, Joy and others who were great sources of information and also requested I let them know when I am going to SCT - the time has come. The date is January 5, 2015. It will take place at Beth Israel Deaconess Medical Center in Boston.

On December 11th I did an overnight stay to begin the process of mobilization. I was given high-dose Cytoxan and, other than feeling generally unwell with headache and nausea from the high-dose infusion, I was able to go home next day, soon felt back-to-normal, and then began the Neupogen injections on the 13th.

I go back to Boston the 22nd for collection. The transplant in January will involve 3 weeks in the hospital and then a 2-week stay in apartments with my caretaker - husband - directly across the street from the hospital.

The doc figures it will take 3 days to collect from me (perhaps even longer) and they may have to give the new drug Mozobil (plerixafor) to help mobilize the stem cells. I have had heavy pre­treatment with 9+ rounds of non-stop chemo with CyBorD (cyclophosphamide, Velcade, dex) for the first 3 rounds, then Revlimid added to the CyBorD, often in the highest dose (25 mg). The docs wanted to get my bone marrow below 20% on biopsy before sending me to SCT, but the best I've achieved is 20-30%. I became neurotoxic after the last two rounds of chemo, with very painful neuropathy and not feeling so well, plus the cancer counts plateaued and weren't coming down much more, so the docs figure enough's-enough, it's time to head to SCT.

I have some anxiety, not just about the SCT, but whether or not it will "work" and I will be able to enjoy a remission for some time. I am worried because I was not able to achieve more than a partial response with pretreatment. I try not to worry about the future but take each day at a time and remain positive and hopeful, but that fear of relapse is there.

I have read through many posts here on the Beacon so I have a better understanding of what-I'm-in-for. It really helps to read other people's experiences to help understand the whole process and know that I'm not alone.

That said, if you have gone through the experience of SCT, what is the one most valuable tip or piece of information you can offer that you wish someone had told you – or perhaps did tell you – and you would like to share?

[Paul53]

Re: Going to SCT - best tip or advice?

by Paul53 on Thu Dec 18, 2014 6:09 pm

Hi,

Good luck. I'm 3 months post transplant. It's not as bad as I expected. At the moment, I have the odd fatigue day, and my legs are tight, but I still ride my bike everywhere. I, too, had a partial response with Velcade etc.

January 6 is the first time I see my doctor since the transplant. We will see then where I'm up to. I've got the stage I; I just want to know whatever my situation is.

Good luck with it.

[Kaew]

Re: Going to SCT - best tip or advice?

by Kaew on Fri Dec 19, 2014 3:36 pm

Hi Melpen,

Good luck with your transplant. I just passed my 2-year mark and in complete remission. I didn't have any problem with the transplant, just some fatigue and mild neuropathy.

An hour before you receive melphalan and an hour after, chew on lots of ice or a popsicle, it will help you from getting a mouth sore. That will be one less thing to worry about.

Sending a good prayer your way, stay positive.

Kaew

[Mister Dana]

Re: Going to SCT - best tip or advice?

by Mister Dana on Sat Dec 20, 2014 1:51 am

My tip -- Before stem cell collection, a nurse looked at my arms to see whether they could collect using big needles in my arms rather than putting in a central line (venous catheter). That was crazy because I would need the central line for my transplant and post-transplant care starting the following week anyway. A second nurse came over and said it was a close call, but I got the central line in time to use it for collection, and I am glad I did.

[mikeb]

Re: Going to SCT - best tip or advice?

by mikeb on Sat Dec 20, 2014 11:45 am

Hi Melissa,

Sounds like you're well on your way, having gone through the Cytoxan already. Glad you tolerated that well. That hospital stay (my first time overnight in a hospital since I was an infant) was sort of a warm-up for me before the stem cell transplant hospital stay itself.

My tip is simple - Exercise every day, even if you don't feel like it. On days where I was not allowed to walk in the hallways because my blood counts were too low, they had a portable cycle thing that I could pedal. Keep as active as you can. Only be in bed when you're sleeping.

Best wishes for a successful SCT with a smooth recovery!

Mike

[LauraScot]

Re: Going to SCT - best tip or advice?

by LauraScot on Sat Dec 20, 2014 3:47 pm

My top tip would be to take good ear plugs and an eyemask. I used them to block out the constant noise of the air conditioning and to help sleep.

Also, there were oral drops I was given to use every day, which were revolting and, when the nausea started, impossible to take. These can be replaced with a pill – much better. As soon as nausea starts, tell the staff. It is easier to stay on top of as soon as it starts than delay and wait.

And I totally agree with Mike – try to get up and exercise a little everyday. Get up, shower, put on comfy clothes and walk around the ward if you are allowed to. I was told that those that can do this get home quicker. Big motivation.

Good luck,
Laura

[MattSchtick]

Re: Going to SCT - best tip or advice?

by MattSchtick on Sat Dec 20, 2014 6:58 pm

You may well lose your sense of taste to some extent, and then food loses its appeal very quickly. I found chewing to be unpleasant (like chewing cardboard), but swallowing liquids was OK, so a lot of my food was in the form of nutritious soups or fruit blended into smoothies. The sense of taste gradually returns as your blood counts recover.

Hope this helps and hope you get a good result. Andy

[wesley]

Re: Going to SCT - best tip or advice?

by wesley on Sat Dec 20, 2014 11:46 pm

Mr Dana is right on. A central line will save a lot of pain and hassle.

And chew ice during the chemo treatment (mine was melphalan).

Wesley

[Wrast5423]

Re: Going to SCT - best tip or advice?

by Wrast5423 on Thu Dec 25, 2014 6:34 pm

My father is 2 years out, in remission. My advice: in tune with your body and communicate changes with your medical team. He had nausea that advanced into stomach cramping & diarrhea just before his counts started their upswing. It ended up being C Diff which was easily managed with standard meds.

Just keep reminding yourself that each day your body is regenerating your new immune system and getting stronger every minute!

[Ellen Harris]

Re: Going to SCT - best tip or advice?

by Ellen Harris on Thu Dec 25, 2014 11:48 pm

It's already been said, but bring your own clothes from home – like sweats and t-shirts. I had a PICC line in my arm, so I didn't need to have front-opening garments. You may need to accommodate that if you have a central line.

I chewed ice for hours after the chemo. I had no mouth sores, but I did have a bad sore throat for a few days. If you have a smart phoneor iphone, make good use of it. I also brought my Kindle for reading and Internet.

Ask for magic mouthwash. It will help with any oral issues you may have. If you can manage a shower everyday, that helps you feel more normal. Don't be shy about asking for pain, nausea or sleep meds. Bring sturdy slippers that you can walk in.

Also, bring a few ski-type pull on hats. I did not lose all of my hair, but most of it came out. Unlike most posters, I did not have my head buzzed, as my scalp seemed a little sore. I am at about day 75 and my hair is just starting to fill in now. I opted for a selection of hats rather than a wig. If you have not already done so get a short haircut.

I was told that I would be in the hospital about a month, but was released on day 16. I was weak but happy to be home. I was also told I would lose 15 pounds in the hospital but only lost about 5. I am a small person to begin with, so that was a plus. Try to eat a few mouthfuls at every meal, but your appetite and taste buds will be off for several weeks.

I hope you have a good caregiver at home available for a few weeks. Please let us know if you have more specific questions. Good luck! You will be amazed at the efficiency of the nurses. They were my heroines at the hospital!