[Annamaria]

Here you are, relapse!

by Annamaria on Sat Aug 22, 2015 11:41 am

After my autologous stem cell transplant (ASCT) in December 2012, consolidation for 4 months, and 30 months drug free, I am relapsing. First slowly, but now I have 80% plasma cells. Gulp!

Yesterday I thought I was going to discuss a plan of action with my doctor, and instead I ended up on one of those armchairs in the oval room of the Santo Spirito Hospital in Rome (ever so beautiful…the oldest hospital in Europe, Fourteenth Century). I had 4 bottles put in my vein: one of dex, one for hydration, one of Zometa because I have lytic lesions (caused by erosion), and a diuretic to get rid of excess calcium circulating in the blood. Then I finally talked with my doctor, who is ordering Revlimid, but it will take 10 days to get there. In the meantime, he started me on dex.

At my hospital, they kindly offer you a sandwich when you are stuck on the chair. I asked for a cheese sandwich, but the nurse said that I could not have it because I have too much calcium. I could have a ham sandwich, however. It vaguely reminded me of when I was little and mummy said no to a request of mine with some reason only she knew about!

Anyway, last night I had insomnia for 4 hours, and this is where I ask you for some advice. I remember some of you mentioning some magic sleeping pills that defeat the action of corti­sone; could you please tell me the chemical name of the drug (not the brand name for America, but the chemical makeup), and I will look for it here in Italy?

It was nice to feel perfectly fine for so long. Mind you, In the back of my mind the worry about a dreaded relapse never went away, so my life was not the same as before. But I was med free and full of energy. In the last period, I was a bit more serene and started to think that my first remission would be 4 or 5 years long … But no, most people relapse within 3 years, and I am no exception. Depressing. Moreover, of course worrying.

Statistically speaking, I believe Revlimid has a good chance of success, at least for one year, and many times for more. However, until I see it working, I cannot help visualizing an assassin who came out from behind a tree with a knife in his hand and looking at me. Revlimid and dex, shoot at him!

[Cheryl G]

Re: Here you are, relapse!

by Cheryl G on Sat Aug 22, 2015 12:19 pm

I was glad to see a post from you again in the forum today, Annamaria, but was then sad to see that you have relapsed. It seems like you are in good hands, though, and I hope you respond well to the treatments you'll receive.

I think this is the discussion thread you were probably thinking of when you asked about suggestions for dealing with sleep issues:

"Help with dexamethasone-related sleep problems?" (started Sep 26, 2014)

You probably can find others by just searching for "sleep", "insomnia", "dex", or "dexamethasone" in the forum search box. (But don't search for all the words at once, unless you use the advanced search function and tell the search to look for "any" of the terms, not "all".)

I think both brand and generic names are included in postings whenever medications are men­tioned, other than common myeloma treatments. However, if both names aren't mentioned, a simple internet search on the name will usually clarify what the drug is.

Best wishes,

Cheryl

[Tracy J]

Re: Here you are, relapse!

by Tracy J on Sun Aug 23, 2015 10:08 am

So sorry you've relapsed. The other shoe is down on the floor now, isn't it?

[Christina]

Re: Here you are, relapse!

by Christina on Sun Aug 23, 2015 10:58 am

Sorry about the relapse. I did very well on Revlimid for 5 years off and on. Then it wasn't working as well, so I'm on Pomalyst. At 2 mg, it didn't do much, so we're trying the full dose of 4 mg. We'll see in another 3 weeks how it worked and how low my neutrophils go.

On dex nights, I take 0.5 mg of Ativan the first night. The second night I take 2, otherwise there would be no sleep at all. Then the rest of the week I'm fine.

Ask for Ativan; it makes a world of difference.

[Jmiller]

Re: Here you are, relapse!

by Jmiller on Sun Aug 23, 2015 1:36 pm

Ambien (zolpidem) works well for my husband. I don't know the chemical makeup though.

[Annamaria]

Re: Here you are, relapse!

by Annamaria on Sun Aug 23, 2015 2:59 pm

Thank you all for your kind words, and thank you for the suggestions about the sleeping pills. Tomorrow when I see my doctor I will ask him if he can prescribe one of them. I wrote down the chemicals of four different medicines.

This is my hospital. The chair I will sit on to get the drip is from this century though!

http://santospiritoinsassia.it/extension/ezdesign/design/ezdesign/flash/flash/img/00.jpg

[Annamaria]

Re: Here you are, relapse!

by Annamaria on Sun Sep 27, 2015 8:39 am

I am in a clinic and I am happy!

Like everybody, I think, when I am in a hospital my greatest desire is to go back home. Not this time! I am experiencing an unusual happiness, but there is a reason. Let me tell you the story:

In August my health started to deteriorate after 30 months of being in remission and in great shape. Within one month I became almost house bound, weak, head spinning, mentally down.

One of the indirect consequences of my relapse has been a painful inflammation of the nerves of the hands, which my doctors told me it is not unusual. Lyrica helps some, but there have been times of continuous moaning as the pain was awful, at times for several hours.

As I was waiting for the lenalidomide (Revlimid) to arrive, which is especially late due to mysterious and only Italian bureaucratic administrative muddles, my doctors started me on dex and Zometa. The meds worked with the excessive calcium so my kidneys can relax and for the time being my lytic lesions will not increase, leading to fractures.

However, as I learned the hard way, sometimes when you take a lot a cortisone and then stop abruptly (I took it for 4 days in a row), your body can experience a severe withdrawal reaction. And that is what happened to me.

First I fainted. Then I stopped eating for 48 hours, I was in pain with my stomach because of the dex in spite of the gastro-protector, my hands were hurting, and I could barely move. I almost went into a trance and I could not react, not even to come to the hospital.

After 2 days, my husband and I decided we had to ask for me to be admitted. It was a matter of reaching the car, which was 100 yards away as we cannot park in front of our house in the country. My greatest goal was to reach it, two people helped me by sustaining me under the arms, and almost 2 hours later we made it to the “Pronto Soccorso” or ER.

This in Italy. I spent 6 hours in the ER department among busy doctors who took care of red code and other serious cases before me. A plethora of characters swarmed by as I was lying on a stretcher in a corridor, even an electrician next to me who repaired a socket! Two Canadians who were talking with my husband while waiting for their relative to be visited said, in disbelieve: “In Canada, this place would be closed in two days!” But the truth is that not many people die or suffer from this madhouse organization, because everybody is chaotically very skilled, alert, intelligent.

In the end they admitted me, but as there was no place in the small hospital, they took me to a nearby clinic that the hospital manages. Everything is free, as the State pays with the people’s taxes.

Doctors and nurses here are fantastic and kind. The doctor understood immediately what had happened and reintroduces dex for days in diminishing doses. Already one day after arriving, I was back on planet Earth. They gave me high doses of Lyrica, which make me woozy but took care of the hands pain. I have been here in this quiet and pleasant clinic for 5 days and I should go home on Monday.

And I have a bout of happiness. It is as if this a parenthesis in my life of worries about the future. First of all, no pain! No fear of a heart collapse, which could have happened on those days I stayed at home, in bed, feeling like an abandoned dog even though my husband took care of me and was very worried. I am taken care of! Somebody loves me!

I joke and I chat with everyone. I go pat the very old lady in the other room and encourage her, and she appreciates it! Some old people are so lonely, all they need is some affection. The weather is perfect and I go sit on a bench in the garden, my head spins some but I take it easy. I feel like I am in a vacuum in which I stop worrying about the future and I enjoy having come out of a scary situation.

In the meantime, dex has stopped the advance of the disease; my spike is identical to the one of last month. Revlimid should arrive soon and I hope it will send the cancer back.

The other thing that makes me happy about being here is the comparison with the conditions I had at the previous hospital I was in at the end of 2012 .That was at the time of the transplant. I am sure it will be similar for many of you: tied to the drip 24 hours a day for 20 days – no go to see other patients for fear of exchanging germs – as few visits from relatives as possible for the same reason. Everyone with a mask on their mouth – the air in the room barely changed for fear of cold drafts (it was December). Reporting on a sheet how many times I vomited, had diarrhea and went to the bathroom. Appalling physical conditions. Here there is a normal situation, there is even a cafe downstairs and I go have a delicious cappuccino when I wish.

I hope you did not get bored with my long story and I hope I did not put you to sleep. Zzzzz

[computerteacher]

Re: Here you are, relapse!

by computerteacher on Sun Sep 27, 2015 10:28 am

Hi AnnaMaria! Thank you for sharing such a beautiful photograph of your hospital. I wish I had thought to do that when I was in Jefferson University Hospital for my stem cell transplant in May. But, I will try to take a photograph of the clinic that I get my maintenance injections & transfusions (I receive a sub-cutaneous injection of Velcade every two weeks, and an intravenous infusion of Zometa every 4 weeks), so we can feel even more connected. With your photo on my screen, your words came to life, and I felt such a bond to your courageous story. I am so appreciative that you took the time to do this for your fellow "pilgrims on their journey along the myeloma path".

[Nancy Shamanna]

Re: Here you are, relapse!

by Nancy Shamanna on Mon Sep 28, 2015 11:06 am

Hi Annamaria,

I hope all goes well with you now, and that you have receive your Revlimid prescription soon. I have had a similar experience, in that I relapsed last year and have been taking Revlimid plus dex. For the first cycle, I did get good results with my 'M' protein falling in value. My oncologist commented that it was probably the dex working first, ahead of the Revlimid. So hang in there!

For sleeplessness, I am taking trazodone, 50 mg, for two days (on the dex day and also the following day). This works for me, since it induces drowsiness, and also has a mild anti-depressive effect. It was actually recommended to me from a neurologist, and prescribed from my family physician!

I hope that helps, and that soon your myeloma gets under control again. Thanks for the lovely picture of the historic building that is a hospital now.

[Maro]

Re: Here you are, relapse!

by Maro on Fri May 27, 2016 7:13 pm

Hello Annamaria,

I read your post a while back and stumbled upon it recently again.

Was wondering how everything was going for you?

Maro.