Montréal, Canada; firstname.lastname@example.org
1957 / Class of 2003 / Type: IgA Lambda / Chemo, spine fracture / Updated: 5/05
(By her husband, Richard Vachon.)
On the 19th of Dec, 2003, at 9:00am, the family doctor called and requested that Hélène go to the emergency room at the local hospital ASAP. He only stated that she had a blood disease. Since this was close to the holidays, my wife was not happy, as she had spent 1½ months in the hospital during last summer. We thought since she was tired that it was due to a bad virus (yeah, right). Once at the hospital an oncologist saw us and after the usual routine questions announced that Helène had Multiple Myeloma. Five minutes later nurses came with needles and what-not and my wife was moved to the oncology floor. She was out of the hospital on Jan 16. She had acute renal failure and a whole bunch of other stuff. Since this was during the holidays, we were changing doctors every other day. At that time, the only thing I was able to find out was that she was at stage III (b) of the disease. She does not remember the first 10 days.
All this came about because of a pre-surgery blood test for a abdominal hernia scheduled for Jan 04.
She has a fracture at L1 and intense lower back pain.
Protocol has of now (March 04) is monthly VAD for four days with Decadron. For pain relief she uses patch (Duragesic 100), (Statex 20g) and (Neurotin 200g).
When we left the hospital on Jan 16, it was a question of installing a port to replace the tubes she had on her arm to insert the chemo. This was supposed to be a 16-minute procedure using local anesthesia. Well not for us: it only happens one in a hundred times, but it had to be us... The doctor perforated her lung during the procedure, and of course was not able to install the port. But since the X-Ray did not show any thing special, we were sent home, only to come back a few days later to the ER for a perforated lung. Back at the hospital again for another 3 weeks, they had to operate on the lung since there were still blood clots caught inside the lung.
She has been out for two weeks as of March 4th, 2004, and just finished the fourth chemo treatment. She went to see the oncologist last Friday, and he said the chemo is working well. But, since her proteins and B2 were still high, he made an appointment with a specialist in Montreal to look at the possibility of a BMT either with her own cells or her sister's, if they are compatible. Since Dec 19 she has lost 30 lbs and her hair.
We live in common-law. This is our second relationship and we have been together for 14 years now. We have five kids (three of her own and two of mine).
My wife's morale is not the highest, although we are trying to get through this. I think things would not be so bad if not for the perforated lung. Anyway, it helps to have this site available.
May, 2004: Hello, since last time I wrote much has happen.
First the excellent news:
The M proteins are coming down! In Dec 03 they were at 78, March 04 at 35 and May 04 at 12. Our oncologist said that Helene's recovery has been phenomenal considering in the shape she was last Dec.
Last Wednesday, we met with a BMT specialist at Hôpital Sacré-Coeur in Montréal. Since Helene’s cancer has regressed by 80%, she will receive 2 BMT's, the first one to start in mid-June and the second one should happen the following month.
The not so good news:
On paper my wife cancer has been decreasing significantly, however, in practical life she seems to attract every complication that comes with this disease.
In April she had to spend two and one-half weeks in hospital with four days in ICU for an infection to her lung, probable cause nobody knows.
At beginning of May, because we were not able to control the pain that is in both her legs now, she is still in hospital.
Out of 137 days she has spent 72 days in hospital so far.
To finish with good news again:
Our morale is rising, although the BMT is a bit scary (especially because my wife likes the complication part of it.) We welcome it because it is our hope for a better life and a chance to beat the disease, and who knows what medical research will discover in the next seven years.
May, 2005: Hello all, time for an update after a year. A lot has happened since May 2004. I just hope it will help others to fight this disease.
Helene started the Dex pulse regimen in June 2004, since her IGA protein rose to approximately 25 from April to June 04. She was scheduled for an auto-SCT, but this was cancelled due to the high level of protein. We were told that there would be side effects but we were not prepared for all of them and did not know all of them. She practically doubled her size from the swelling, could hardly keep her eyes open and slept for the next three months of the regimen. Did not matter whether it was days off or on, she simply slept all the way through and when she was not sleeping she was fainting, so she was granted trips to the ER.
To this day I believe that her fainting was due to a mix of medication. For pain relief she was taking Neurontin, Fentanyl (patches) and Dilaudid, and for moral it was Celexa and Xanax for anxiety attack, and for cancer treatment the famous Dexamethasone.
At the end of September 2004 we were followed by a SCT specialist in Montréal. He did a blood test to prepare for the transplant, and looked at the IGA protein. Although the number dropped during the treatment, we were back at 25. So all of this was for nothing. The doctor decided to go ahead with the transplant. The collection of the stem cells went well. We collected enough for four to five transplants, at last good news. The SCT was done the 19th of November 2004. When the nurses saw my wife they all said to me later that they thought my wife would be a complicated case due to her past history and the shape she came in. Well, as I said, she received her own stem cell the 19 Nov and she was out of the hospital the 3 Dec 04 and in better shape than when she came in. Finally, we would spend the holidays at home.
The holidays went well except for the pain in her lower back, upper back, legs, and arms. In Feb 05 we tried to see what can be done to manage the pain. The doctor thought that she might have necrosis in her knees, and this would have been caused by the Pulse Dex regimen. So a battery of tests were done and they were all negative: there was no evidence of necrosis. But the pain was still there in her lower back and knees. After going through all medications, the doctors decided to start with Methadone and Dilaudid, and we thought that this would ease the pain, but it didn't. So we pushed to get a Vertebroplasty, which was done last April. We had a lot of hope in this procedure, but it relieved about 10% of Helene's pain. She is still taking Methadone (95mg a day) and five Dilaudid injections. There is no more Neurontin and patches (Fentanyl). She still uses Celexa (25 mg a day) and sleeping pills when needed, and the monthly Zometa that started in Jan 04.
We saw our specialist to get more results on May 2nd, 2005. This was not a good day: even after the SCT the IGA protein is up again to 16. After the SCT they were down to 4. As we liked to know what to expect from this disease since the beginning, the doctor was very honest, with my wife's past history. So far, after three treatments, the cancer comes back three to four months after each treatment. There was discussion of a second SCT, but we decided not to. We will try Velcade and see how far we can go and hopefully, for once, be in front of the cancer and let the MM run after us.
Good luck to all of you and a lot of love,
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