Hi,
I have been reading this forum for some time now and already feel that I know some people quite well. It's a great resource! I found it because my younger sister has recently been diagnosed with multiple myeloma.
She has been having health problems for some time: bone pain, especially in her hip bone and later ribs. Then she developed a tumor in her breast. It was removed and came back benign, only to return a month later as malignant. She had a full mastectomy, all the way telling the doctors that she was worried her cancer must have spread to her bones, as her bone pain was increasing. But the doctors thought for some time that it was unrelated and that she had breast cancer that was discovered early, because her lymph nodes were clear. She was even told she was now cured and would not need any further treatment.
However, the lab tests were very puzzling and after a lot of different pathologists studied the tumor, it turned out to be a plasmacytoma. Again, the doctors thought that it was a solitary tumor and still were ignoring her bone pain. Eventually she went to a hematologist-oncologist who immediately suspected multiple myeloma, and the diagnosis was confirmed as Stage III with total skeletal involvement: skull, spine, ribs, you name it. However, the doctors are promising her a good outcome, she even believes that she can be cured.
I am still in shock about what is happening with my sister.
She is now receiving a very aggressive treatment and has been told that they would not be able to do an autologous transplant (not sure why, but they do not believe they would be able to harvest her stem cells). The doctors are suggesting an allo with a related donor as her only option. I do not know if I am a match yet, but potentially may be a donor for my sister. It is scary, as it sounds like a very risky process. My sister is having bad side effects from her current chemo (including heart arrhythmia and very high blood pressure, swollen hands, ankles and face and extreme fatigue). It is all very scary, but I am glad I found this resource.
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10 posts
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Little sister in a lot of pain
Welcome Gala,
Glad that you have found us, but really saddened by your sisters' situation and all of the problems she has had in getting an accurate diagnosis. Sadly, with myeloma this is too often the case; but if there is any good news, it is the fact that with myeloma, unlike many other cancers, these later stage complications can often be reversed with good treatment. There are many posts on here sharing such stories.
Gala, in another post you mentioned that your sister is abroad; would I be out of line in asking what country she lives in, because there are people from many places on here and sometimes some local knowledge can be useful.
Thoughts and prayers that everything that happens from now on will be positive,
Ronda
Glad that you have found us, but really saddened by your sisters' situation and all of the problems she has had in getting an accurate diagnosis. Sadly, with myeloma this is too often the case; but if there is any good news, it is the fact that with myeloma, unlike many other cancers, these later stage complications can often be reversed with good treatment. There are many posts on here sharing such stories.
Gala, in another post you mentioned that your sister is abroad; would I be out of line in asking what country she lives in, because there are people from many places on here and sometimes some local knowledge can be useful.
Thoughts and prayers that everything that happens from now on will be positive,
Ronda
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RondaV - Name: RondaV
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Nov 2011
- Age at diagnosis: 70
Re: Little sister in a lot of pain
Hi Gala,
Welcome to the forum. I feel for what you and your sister are going through.
I glanced at your profile and it looks like your sister is in Russia? If you haven't figured it out yet, Mark11 is our most knowledgeable allo patient on this forum. He usually comments on threads involving allo transplants.
Welcome to the forum. I feel for what you and your sister are going through.
I glanced at your profile and it looks like your sister is in Russia? If you haven't figured it out yet, Mark11 is our most knowledgeable allo patient on this forum. He usually comments on threads involving allo transplants.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Little sister in a lot of pain
Hi Ronda and Multibilly,
Thank you so much for your support. Yes, we are hoping that my sister's condition will be improved with treatment. My concern now is for her to get through the treatment and it not to be stopped due to serious side-effects.
It is not out of line at all to ask where she is. I think it is quite relevant. I actually put this info into the profile, but then noticed that it does not come up in the signature. Yes, my sister is in Russia. The culture there is different in terms of how doctors relate to patients. It's much more directive and the patients are not given much information about their odds and different options. In a way it is easier, but then you are not in control. You have to be really proactive as a patient. This is why I am particularly interested in knowing more from the international myeloma community, so that we can challenge things if necessary or rest assured that she is getting the best possible care and treatment.
Thank you so much for your support. Yes, we are hoping that my sister's condition will be improved with treatment. My concern now is for her to get through the treatment and it not to be stopped due to serious side-effects.
It is not out of line at all to ask where she is. I think it is quite relevant. I actually put this info into the profile, but then noticed that it does not come up in the signature. Yes, my sister is in Russia. The culture there is different in terms of how doctors relate to patients. It's much more directive and the patients are not given much information about their odds and different options. In a way it is easier, but then you are not in control. You have to be really proactive as a patient. This is why I am particularly interested in knowing more from the international myeloma community, so that we can challenge things if necessary or rest assured that she is getting the best possible care and treatment.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Little sister in a lot of pain
Gala:
Could you tell us a little more, if you know, about your sister's treatments? For example, what medications is she receiving to deal with the myeloma? I am interested in what is currently offered to patients in Russia.
Could you tell us a little more, if you know, about your sister's treatments? For example, what medications is she receiving to deal with the myeloma? I am interested in what is currently offered to patients in Russia.
Re: Little sister in a lot of pain
Hi mrozdav
I don't have full information about my sister's treatment, simply because the doctors there do not really share much with patients unless they ask specifically, and I feel that my sister does not want to know and prefers to put her faith into her doctors. This is her way of coping.
But from what I know she is receiving doxorubicin, Velcade (bortezomib) and dexamethasone. Allo transplant has been suggested by the doctors to follow. The protocol is (approximately): 4 to 6 cycles depending on response.
She is now having the first cycle. It is inpatient. She is staying in hospital for two weeks. For the first four days she was receiving doxorubicin IV infusions continuously, that is 96 hours nonstop (I don't know the dosage). This was combined with injections of Velcade and she was also given dexamethasone (again, I am not sure about the dosage). Alongside that she was receiving some medication to strengthen the bone (don't know which one) and to reduce side effects (such as heart medication).
She had horrible side effects from that chemo. Then she had three days of rest from chemo, still staying in hospital. During that time she was receiving what they called 'flushing', i.e. clearing the system from the effects of chemo: hydration, glucose, etc.
She has now started another four days of chemo, but the IV infusions are now given for 12 hours during the day only and she says it feels more manageable. After this she will have this 'flushing' again and will be discharged for about a week, then she will return to hospital for another 3 to 5 cycles that are expected to be shorter (week's hospital stay).
My sister's treatment is supposed to be the most aggressive possible due to her high-risk cancer. This means that it may not be a standard protocol for all myeloma patients. She has just told me that her blood tests show that she is responding to chemo, which is good news.
I don't have full information about my sister's treatment, simply because the doctors there do not really share much with patients unless they ask specifically, and I feel that my sister does not want to know and prefers to put her faith into her doctors. This is her way of coping.
But from what I know she is receiving doxorubicin, Velcade (bortezomib) and dexamethasone. Allo transplant has been suggested by the doctors to follow. The protocol is (approximately): 4 to 6 cycles depending on response.
She is now having the first cycle. It is inpatient. She is staying in hospital for two weeks. For the first four days she was receiving doxorubicin IV infusions continuously, that is 96 hours nonstop (I don't know the dosage). This was combined with injections of Velcade and she was also given dexamethasone (again, I am not sure about the dosage). Alongside that she was receiving some medication to strengthen the bone (don't know which one) and to reduce side effects (such as heart medication).
She had horrible side effects from that chemo. Then she had three days of rest from chemo, still staying in hospital. During that time she was receiving what they called 'flushing', i.e. clearing the system from the effects of chemo: hydration, glucose, etc.
She has now started another four days of chemo, but the IV infusions are now given for 12 hours during the day only and she says it feels more manageable. After this she will have this 'flushing' again and will be discharged for about a week, then she will return to hospital for another 3 to 5 cycles that are expected to be shorter (week's hospital stay).
My sister's treatment is supposed to be the most aggressive possible due to her high-risk cancer. This means that it may not be a standard protocol for all myeloma patients. She has just told me that her blood tests show that she is responding to chemo, which is good news.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Little sister in a lot of pain
Welcome, Gala,
I am so very sorry to hear your sister’s story, but she is lucky to have such a loving and caring sister on her side.
It sounds like she is enduring very harsh and challenging treatments. 96 straight hours of doxorubicin sounds beyond excruciating (they don’t call this drug the “Red Devil” for nothing), and, though I know very little of your sister’s situation, my concern would be the aggressiveness of the treatment protocol. Irreversible cardiac damage is a potential side effect of doxorubicin and, as a consequence, there are stringent restrictions on the individual dosages and cumulative lifetime dosages that a patient can receive.
Since myeloma is such a complicated disease, most patients in North America tend to seek out more than one opinion before making treatment decisions. I do understand that your sister was in a lot of pain, and that the objective was to get her into treatment as quickly as possible. But since you can’t advocate on your sister’s behalf directly with her doctor due to location, is there another trusted family member or friend living close to your sister who could? Perhaps a local patient advocate could also find out why an auto is not possible and why an allo transplant is her only option.
Wishing the best for your sister,
Karen
I am so very sorry to hear your sister’s story, but she is lucky to have such a loving and caring sister on her side.
It sounds like she is enduring very harsh and challenging treatments. 96 straight hours of doxorubicin sounds beyond excruciating (they don’t call this drug the “Red Devil” for nothing), and, though I know very little of your sister’s situation, my concern would be the aggressiveness of the treatment protocol. Irreversible cardiac damage is a potential side effect of doxorubicin and, as a consequence, there are stringent restrictions on the individual dosages and cumulative lifetime dosages that a patient can receive.
Since myeloma is such a complicated disease, most patients in North America tend to seek out more than one opinion before making treatment decisions. I do understand that your sister was in a lot of pain, and that the objective was to get her into treatment as quickly as possible. But since you can’t advocate on your sister’s behalf directly with her doctor due to location, is there another trusted family member or friend living close to your sister who could? Perhaps a local patient advocate could also find out why an auto is not possible and why an allo transplant is her only option.
Wishing the best for your sister,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Little sister in a lot of pain
Hi Karen,
Thank you very much for your support and expressing your concern about my sister's treatment. This is my concern also, especially because my sister's heart has not been completely healthy anyway (she takes heart medication). She did experience cardiac side effects during this first round of chemo.
I'll definitely ask her husband and her friend, who is a physician, to try and advocate and seek a second opinion. I already told him to check about allo vs. auto transplant. The problem is that, in Russia, patients tend to be more compliant and shy to question doctor's orders.
I hope that permanent damage has not yet been done and they will at least have a talk with her doctors about the safety of her treatment and the best way to move forward.
Thank you again for your kind words.
Thank you very much for your support and expressing your concern about my sister's treatment. This is my concern also, especially because my sister's heart has not been completely healthy anyway (she takes heart medication). She did experience cardiac side effects during this first round of chemo.
I'll definitely ask her husband and her friend, who is a physician, to try and advocate and seek a second opinion. I already told him to check about allo vs. auto transplant. The problem is that, in Russia, patients tend to be more compliant and shy to question doctor's orders.
I hope that permanent damage has not yet been done and they will at least have a talk with her doctors about the safety of her treatment and the best way to move forward.
Thank you again for your kind words.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Little sister in a lot of pain
Hi Gala,
That is great news that your sister has a physician friend who may be able to advocate directly on her behalf, and it would indeed be very helpful for your family to understand why an autologous stem cell transplant is not a possibility for your sister. In autologous transplantation, stem cells are collected from the patient's blood prior to high-dose chemotherapy, and the stem cells that are collected must be mobilised from the bone marrow in the blood. A commonly used agent in North America for stem cell mobilisation is G-CSF (filgrastim, peg-filgrastim / Neuopogen, Neulasta). Sometimes adding plerixafor (Mozobil) to G-CSF leads to an even better stem cell harvest. Perhaps G-CSF and plerixafor would not be appropriate in your sister’s case, but it may be worth asking the question.
Do you think it would be possible to obtain your sister’s lab results? There are some very knowledgeable people on this site who may be able to direct you better on what questions to ask her doctors – if they could review the results.
Wishing you all the best,
Karen
That is great news that your sister has a physician friend who may be able to advocate directly on her behalf, and it would indeed be very helpful for your family to understand why an autologous stem cell transplant is not a possibility for your sister. In autologous transplantation, stem cells are collected from the patient's blood prior to high-dose chemotherapy, and the stem cells that are collected must be mobilised from the bone marrow in the blood. A commonly used agent in North America for stem cell mobilisation is G-CSF (filgrastim, peg-filgrastim / Neuopogen, Neulasta). Sometimes adding plerixafor (Mozobil) to G-CSF leads to an even better stem cell harvest. Perhaps G-CSF and plerixafor would not be appropriate in your sister’s case, but it may be worth asking the question.
Do you think it would be possible to obtain your sister’s lab results? There are some very knowledgeable people on this site who may be able to direct you better on what questions to ask her doctors – if they could review the results.
Wishing you all the best,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Little sister in a lot of pain
Hi Karen,
Thanks again for your support. We'll try to get to the bottom of this. I asked my sister about her lab results and she said she had those at home, so I might ask her husband to send them to me to have a look.
In the meantime, the current monitoring showed reduction in both blood calcium and protein levels (not sure which), reduced anemia and increased number of lymphocytes. This is good news meaning hopefully that the chemo is working.
I am still very worried about the side effects of this aggressive chemo. Right now she has high blood pressure, which means her vascular system is being compromised. She is being monitored and treated for it, but the blood pressure still stays high most of the time.
Thanks again for your support. We'll try to get to the bottom of this. I asked my sister about her lab results and she said she had those at home, so I might ask her husband to send them to me to have a look.
In the meantime, the current monitoring showed reduction in both blood calcium and protein levels (not sure which), reduced anemia and increased number of lymphocytes. This is good news meaning hopefully that the chemo is working.
I am still very worried about the side effects of this aggressive chemo. Right now she has high blood pressure, which means her vascular system is being compromised. She is being monitored and treated for it, but the blood pressure still stays high most of the time.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
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