Month: May 2003


My dentist is going to have me come for cleanings three times a year now. She said that she wants to keep the bacteria levels down in my mouth. Sounds like a good idea to me. She also said that she will have me take some antibiotics prior to cleanings. When they’re poking around in your mouth, some of that bacteria can get into the bloodstream.

It’s important for those of us with MM to take good care of our teeth and pay attention to oral health. Next time I see my dentist, I’ll get a better explanation of this and post it here.

Platelets & RBC

When I look at my labs over the last few months, one thing I see is that my platelets drop each time. They’re still within the normal range, but it’s a helpless feeling I get when I see that number go down with each successive report. I think aspirin could be affecting my platelet count. I take one 325 mg aspirin per day as a preventative for DVT that may result from the use of dexamethasone and thalidomide. This is something I’ll have to ask the doctor about.

My red blood count is also down. Lower than I’ve ever seen it before. I had another CBC done today and will see the results tomorrow, so I’ll know if it was just a one time thing or not.



I’ve lost 3/4 inch in height from disc compression! No fractures, thank goodness. This must have happened over time. It had been a while since anyone measured my height. I used to be 5 ft 5.25 inches tall. Now I’m 5′ 4.5″. Yikes. I still tower over my mom, who is 4′ 11″ (if that).

Letter Writing

Today I spent the day printing letters for the IMF “Write for the Cure” campaign. I will be sending out 40 letters (to practically everyone I know), asking for donations to the IMF to help fund research. I hope people will respond and not just throw them away.

We are also going to work with the MMRF to try to get donations. I think next spring we’ll even have a golf tournament to try to raise money.


Velcade was approved for use by the FDA today. This gives many new hope. I have heard from other MM folks that Velcade has been particularly effective against IgA MM, which is what I have. It has been reserved for use with patients who have failed at least 2 prior treatments. It’s not intended as a front line therapy. I expect many of us will eventually benefit from it. Here’s the Millennium Press Release.

Dex day

Today was the first of my weekly 40 mg dex doses. I will do this every Monday until I’m told to stop. I woke up at 6 am and took it then. Now I feel speedy. My heart rate is up and I feel it doing its thing. It does wear me out. I’m feeling tired already. I suppose after a few weeks or a month of taking dex weekly, I should adjust and not feel so strange. Correct me if I’m wrong!

After the 4 pulses (4 days on and 4 days off), I think I had what was withdrawal. Even my teeth became sensitive. I had headaches and some aches and pains. Did anyone else have this?

Allo SCT: High rate of remission and low rate of disease recurrence

I sent this to myself by email to read, and now am having trouble remembering where I found it so I can properly cite my source. Please read and comment!

High rate of remission and low rate of disease recurrence in patients
with multiple myeloma allografted with PBSC from their HLA-identical sibling

I Majolino1, P Corradini2, R Scim?3, M Falda4, A Bosi5, C Tarella4, M
Musso6, A Olivieri7, M Boccadoro4, R Marcen?3, A Santoro3 and A Pileri4

1Hematology and Bone Marrow Transplantation Unit, Azienda Ospedaliera
S.Camillo-Forlanini, Roma

2Bone Marrow Transplantation Unit, Istituto Nazionale Tumori, Milan

3Division of Hematology, Ospedale V.Cervello, Palermo

4Hospital and University Divisions of Hematology, Ospedale S.Giovanni
Battista, Torino

5Bone Marrow Transplantation Unit, Department of Hematology, Ospedale
di Careggi, Florence

6Unit of Onco-hematology, Casa di Cura ‘La Maddalena’, Palermo

7Hematology Department, Ospedale di Torrette, Ancona, Italy

Correspondence to: Dr I Majolino, Unit? Operativa di Ematologia e
Trapianti di Midollo Osseo, Azienda Ospedaliera S.Camillo-Forlanini,
Circonvallazione Gianicolense 87, 00152 Roma, Italy. E-mail:



A total of 30 multiple myeloma patients (M=23, F=7; age 31-55 years,
median 48) were allografted with peripheral blood stem cells (PBSC) from
HLA-identical siblings. Time to transplantation was 3-107 months (median 8).
Prior chemotherapy lines varied from 1 to 6 (median 1). Four patients were
in complete remission (CR), 11 in partial remission (PR), 13 were considered
to be nonresponders, and two had progressive disease. Most were conditioned
with busulfan-melphalan. PBSC were collected by apheresis after G-CSF or
sequential GM-CSF and G-CSF. The patients were grafted with 4.4-24.1 ?
106/kg CD34+ (median 7.9) and 0.9-7.9 ? 108/kg CD3+ cells (median 2.3). GVHD
prophylaxis was methotrexate-cyclosporine. Engraftment was complete and
rapid. Grades II-IV acute GVHD (aGVHD) developed in 16 (53%), but was grade
III-IV only in five (17%); chronic GVHD (cGVHD) developed in 17 out of the
24 evaluable patients (71%). A total of 18 patients (71%) attained CR after
transplantation. TRM was 30% overall, 16% at 100 days. There was only one
relapse. Overall survival and event-free survival at 73 months were 60% and
67%, respectively. PCR negativity for IgH-gene rearrangement occurred in all
persistently CR patients studied. PBSC allograft can induce long remissions,
because of profound suppression of the neoplastic clone that is probably
linked to the antitumor effect of cGVHD.

Bone Marrow Transplantation (2003) 31, 767-773.


myeloma; allogeneic; transplantation; PBSC; GVHD

Received 31 May 2002; accepted 3 December 2002

May (1) 2003, Volume 31, Number 9, Pages 767-773

What the news reports didn’t say

This was at the site.
It refers to the reports we’ve been reading that tell us SCT will buy us time.

Limitations: For most, if not all patients with multiple myeloma, cautioned Wilson, high-dose therapy with stem-cell transplantation is not a cure. The treatment has risks. In the short term, patients who undergo the procedure are at increased risk for infection and bleeding. Longer term, they have a higher risk for problems such as infertility, cataracts, and new cancers.

Other new therapies with fewer side effects, including the drugs thalidomide and velcade, may be equally effective at extending survival in patients with multiple myeloma, and will need to be studied in this setting, said Wilson.

?High-dose therapy with stem-cell transplantation may be appropriate for otherwise healthy patients who want aggressive treatment,? he added. ?However, I would not blindly recommend it as first-line treatment for all patients with multiple myeloma.?