Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

Shrinking

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

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
donors

I Majolino1, P Corradini2, R ScimË3, M Falda4, A Bosi5, C Tarella4, M
Musso6, A Olivieri7, M Boccadoro4, R MarcenÚ3, 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:
imajolino@libero.it

Abstract

Summary:

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.
doi:10.1038/sj.bmt.1703924

Keywords

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 cancer.gov 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.

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

The effects of diet

There’s something to be said for a healthy diet. I wish I’d made changes years ago. Like a lot of people, I don’t do much of anything until I have to. Since I cut out dairy, sugar, processed foods, and coffee (and any beverages but water, tea and juice), I’ve noticed a lot of changes. I used to have a clogged feeling in my sinuses all the time. It felt like I was breathing through pin holes! Now I can take a deep breath through my nose and not pass out from lack of oxygen. :) I haven’t had that stuffy feeling in months. The first few weeks, my nose ran copiously, but now that’s a rare event. My rough elbows are gone too! Now the skin is smooth as a baby’s bottom! I had been seeing a dermatologist for acne and rosacea, and guess what? That’s all gone too.

Before dx, I had a lot of stomach problems. I don’t know what caused them. It could have been coffee or dairy (or all the other crap). I just felt yucky almost every day. I no longer have that problem.

No doctor I ever saw for any problem I had discussed changes in diet with me. I imagine it would have been wasted anyway. I just wasn’t ready for that. I’m afraid I’ve become a little preachy to friends and family about the importance of cutting the garbage out of one’s diet.

In addition to what I mentioned above, I also saw a drop in my serum IgA and M-spikes. I will have another SIEP test on May 15th, and will post the results here. We’ll see how the diet, thalidomide and dexamethasone are doing against the MM.

Stem Cell Transplant

There’s been a story in the news the past few days about how stem cell transplant is the standard of care for MM patients, and a study has been released that shows data to support that SCT resulted in longer survival for MM patients. This is a link to the CNN story. This is the Yahoo News story.

It says that median survival after SCT was about a year longer than for those who just had standard chemo. I’ve been obsessing about SCT ever since I learned about it after diagnosis. I am terrified of it. I know some people who have been through it and didn’t have such a hard time. Others had some difficulties. Most of the people I talked to (on the MM list) had SCT and relapsed. I guess the successful ones aren’t on the list anymore?

The things I’m struggling with are issues like:
– No way to predict the outcome. Will I get any remission at all?
– What will the long term effects be? Someone on the list had reported having lost the use of her right arm. Was this a result of the high dose chemo/nerve damage?
– If I’m pretty healthy already, will killing my immune system weaken me so that I will now be susceptible to other things I never faced before?

Here I am at 41 years old. I have NEVER had anything like pneumonia or bronchitis. I have never even had a urinary tract infection. I can count the number of fevers I’ve had in my lifetime on one hand. I have never broken a bone.

I really don’t know what to do about this. I don’t know how to make this decision, and I can’t stop thinking about it. Sometimes I’m almost ready to accept it. Sometimes I just think I’d rather die than go through that. I know that lots of people have lived through it and are fine. I just don’t know how you balance the possible benefits (or none at all, possibly) with the risks. I have never felt really crummy for weeks on end. Is that what having a SCT feels like? Weeks of suffering? Can anyone comment?