My father was diagnosed with multiple myeloma on 26th December, 2013.
He was 56 then, now 57.
In September 2013 he complained of severe back pain with numbness in 2 toes of left leg. On 9th September 2013 he had an MRI of lower back (MRI lumbo - sacral spine) as told by an orthopedician, which showed diffuse disc bulges of L4-5 and L5-S1 IV discs with indentation of bilateral L4 and compression of bilateral L5 and S1 nerve roots and also mild diffuse disc bulges of L1-2,L2-3 and L3-4 IV discs.
Many big hospitals in Delhi told us to have a spine surgery, but they also said to avoid surgery we could try taking bed rest and see if the pain subsides on its own. Dad was very busy in September due to office work and worked despite of the pain. He took full bed rest in October and got much better. Till November the pain was very less.
But in December, now he complained of upper back pain and lower neck pain. Now, the pain was so worse that he had great difficulty while lying down and sometimes also complained of breathlessness. The doctor again did an MRI now of upper back (MRI dorsal spine) which showed metastasts.
He was admitted to Rajiv Gandhi Cancer Hospital, Delhi from 27-30 December. His hemoglobin was 7.60 (ESR 82) and thus was given three units of blood.
He was given Lenangio (lenalidomide, Revlimid), Wysolone (prednisolone) and Zoledac (zoledronic acid, Zometa) as follows:
Chemotherapy Regimen:
Tab Lenangio 25mg once a day x 21 days
Followed by 1 week rest.
Tab Wysolone 40mg weekly
Inj Zoledac: given on 28/12/13
On 8th, when we went back to the hospital, there was no change in the pain, it still was very severe, he had a lot of pain while changing from sitting position to sleeping position and vice-versa. The doctor then advised radiation. Then, he had a full back MRI, which showed a crack in the rib.
So, then he was given 10 radiations in the center of back and 5 radiations on the rib. After the radiation, he had less pain, but the pain was still very prominent. The radiation ended on 18th Jan.2014, which also marked the end of 21 day regimen of lenalidomide. So, now he was on a 7-day rest. Also, during this whole period he developed red spots all over his body which were extremely itchy.
Also, on 14th January, along with kidney and hemogram tests, we did another M-Spike test.The M-Spike came to be as 2.43. (Before the diagnosis on 27th December, his M-Spike was 4.18)
He also now had a problem of swallowing any liquid, which was then treated by Forcan (fluconazole, Diflucan) and Pantop D SR (pantoprazole, Protonix).
We then consulted another doctor for a second opinion who suggested bortezomib (Velcade). My father then started his weekly BTD [bortezomib-thalidomide-dexamethasone] regimen from 27th January. (After one cycle of lenalidomide and dexamethasone). He got his third injection on 16th Feb. His M Spike was not seen. But he was experiencing little neuropathy and swelling in his legs, face and also under the eyes after the third injection. Otherwise, he was doing his daily routine.
The swelling intensified because of thalidomide, so thalidomide was stopped in the third cycle and thus he was on weekly injection of bortezomib with weekly dose of 40 mg dexamethasone and monthly Zometa.
His fifth cycle (1st cycle of lenalidomide and dex + 4 cycles of bortezomib and dex) completed in May 2014. So, now he was on bortezomib and dex. Also, his M-spike was still negative from February but kappa-lambda ratio, which once came to 2.3, rose to 2.9 and then to 4.2 and now it is 5.6.
From the past month he was complaining of severe pain in his arms. He had great difficulty in picking up a mug even. On consulting our doctor, he told us that it was not related to myeloma and my father was given pain killers. The pain worsened and spread to the legs. He had a MRI of spine yesterday and on we showed it to the doctor today.
The MRI had this written:
Lytic lesions in D5 and D7 vertebral body with wedge collapse of D5. Altered marrow signal intensity of all vertebrae. Spondylotic changes are seen in form of osteophytes. Diffuse disc bulge seen at C3-C4 & C4-C5 level with indentation of ventral thecal sac and altered marrow signal of all vertebrae appears heterogeneously hyperintense on T2 and hypointense T1 W images.
Our neurosurgeon told that the D5 which was already weak before had now collapsed and D7 is almost collapsed also. Now, the doctor is suggesting kyphoplasty. He said that it may or may not work because there is a gap in the D5 area.
Also, now the doctor told us to start with thalidomide again from today and stopped bortezomib. The neurosurgeon is not sure that the pain in arms would go away if kyphoplasty is done and our hematologist is not sure if kyphoplasty will help.
The neurosurgeon also said not to move much and even not to drive. An hour ago, he was not able to lie down as there was excruciating pain in his legs and arms. If the back area around D5 is touched, then there is pain in the back. My mother gave Ultracet [tramadol + acetaminophen / paracetamol / Tylenol] and dex, and the pain got a little better in an hour.
Now, we don't know what to do. Please give your opinions and suggestions.
As the neurosurgeon is not sure that the pain in arms would go away and our hematologist is not sure if kyphoplasty will help, we are confused.
Can the D5, D7 compression cause pain in arms? Shall we do an MRI of arms and legs too? Another doctor is suggesting PET scan. Should we do a PET scan?
It is a very difficult time for us, to see my father in so much pain, so please help with your suggestions.
Thank you so much.
Forums
10 posts
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surbhijain93 - Name: Surbhi Jain
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: Dec 24, 2013
- Age at diagnosis: 57
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
I'm sorry that your father has been having so many problems that don't seem to being addressed satisfactorily.
I have a couple of questions to clarify what you posted that are differences in terminology between the U.S. and India. First, when you refer to the D5 and D7 vertebrae are you referring to the cervical (neck) vertebrae? If so, yes, this could cause weakness and pain in the hands and arms.
Second, you mention both thalidomide and lenalidomide almost interchangeably. They are 2 different drugs. They are both immunomodulatory drugs. Thalidomide is the older drug and is known to cause peripheral neuropathy. Lenalidomide is the newer drug which rarely causes peripheral neuropathy.
Third is your father being seen by a myeloma specialist?
If your father isn't being seen by a myeloma specialist, I would suggest that you seek one out for him. Second, combining the bortezomib (Velcade), given subcutaneously (not by infusion), with lenalidomide (Revlimid) is fairly common practice here in the U.S., with good results.
Kyphoplasty might help and it sounds like your father might need it in multiple areas. It also sounds like a spinal fusion might be considered in the D5-D7 region. And, then after any spinal surgeries are done, possibly some radiation.
These are just suggestions based on what others have posted and reading I've done. I hope that your father's treatment is figured out soon and that he begins to improve.
Nancy in Phila
I have a couple of questions to clarify what you posted that are differences in terminology between the U.S. and India. First, when you refer to the D5 and D7 vertebrae are you referring to the cervical (neck) vertebrae? If so, yes, this could cause weakness and pain in the hands and arms.
Second, you mention both thalidomide and lenalidomide almost interchangeably. They are 2 different drugs. They are both immunomodulatory drugs. Thalidomide is the older drug and is known to cause peripheral neuropathy. Lenalidomide is the newer drug which rarely causes peripheral neuropathy.
Third is your father being seen by a myeloma specialist?
If your father isn't being seen by a myeloma specialist, I would suggest that you seek one out for him. Second, combining the bortezomib (Velcade), given subcutaneously (not by infusion), with lenalidomide (Revlimid) is fairly common practice here in the U.S., with good results.
Kyphoplasty might help and it sounds like your father might need it in multiple areas. It also sounds like a spinal fusion might be considered in the D5-D7 region. And, then after any spinal surgeries are done, possibly some radiation.
These are just suggestions based on what others have posted and reading I've done. I hope that your father's treatment is figured out soon and that he begins to improve.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
Namaste Surbhi Jain, I also am sorry to hear how your father's myeloma has taken this turn of him having severe pain.
I thought that the neuropathy which is well known to be a side effect of taking thalidomide would not be the same as the back pain. The back pain may well be from the wedge fractures, based on what I know of myeloma. Also, the numbness down the legs is a worry since it may have to do with the back fractures causing some compression of the spinal cord. I am not a doctor, but when I had fractures, these were the sort of concerns my doctors had. I do know people who have had kyphoplasty, it is quite a usual procedure for collapsed vertebrae, it seems.
I think that perhaps your father should be seen at the hospital, for urgent care, for he may need to be admitted there. Is there the equivalent of calling '911' in Delhi? I know that it is a very large city with many well educated medical staff in the hospitals there.
I agree with Nancy that if you are not already seeing a myeloma specialist, you should, and I think you may need urgent care. Good luck and please let us know how everything is going for your family.
I thought that the neuropathy which is well known to be a side effect of taking thalidomide would not be the same as the back pain. The back pain may well be from the wedge fractures, based on what I know of myeloma. Also, the numbness down the legs is a worry since it may have to do with the back fractures causing some compression of the spinal cord. I am not a doctor, but when I had fractures, these were the sort of concerns my doctors had. I do know people who have had kyphoplasty, it is quite a usual procedure for collapsed vertebrae, it seems.
I think that perhaps your father should be seen at the hospital, for urgent care, for he may need to be admitted there. Is there the equivalent of calling '911' in Delhi? I know that it is a very large city with many well educated medical staff in the hospitals there.
I agree with Nancy that if you are not already seeing a myeloma specialist, you should, and I think you may need urgent care. Good luck and please let us know how everything is going for your family.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
i agree with doing the kyphoplasty. If the lesions are at C5 and C7 then yes, pain in the arms could be a symptoms.
If the m-spike is still zero and there are just minor changes in the free light chains, I don't think the Velcade (bortezomib) needs to be changed.
If the m-spike is still zero and there are just minor changes in the free light chains, I don't think the Velcade (bortezomib) needs to be changed.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
First of all, I apologize for replying so late. I am so sorry but I thought I had replied, my bad. Actually, there was so much my father and our family had to go through this month.
Firstly, thank you so much Ms. Nancy Stewart for replying. Firstly, you asked if D5 and D7 vertebrae are the cervical (neck) vertebra. No, they are in the lower spine region. Our doctor had suggested khyphoplasty but on taking a second opinion it was told to us that, as the pain was not in the back region (it is in arms, shoulders and elbow), kyphoplasty must be postponed till back symptoms are shown.
Also, thank you so much Ms. Nancy Shamanna for your reply.
You both asked if my father was seeing a myeloma doctor. Yes, he is.
Thank you so much, Dr. Jason Valent for your valuable suggestion.
To sum up this was the case actually, (I might post a new question if you all want. Actually, I want to share all this with all of you as it is so comforting and relieving to know that people really help and want to listen to you, sorry if I am being melodramatic
)
My father had his first cycle of chemo in Jan, 2014. That was of lenalidomide [Revlimid] and dexamethasone. But because of the dex, he developed rashes all over his body.
In Feb, the chemo changed to bortezomib [Velcade], dex and thalidomide. His M spike came to 0 (from 4.1 in Dec) in February end itself. Till May, this regimen was continued. His kappa lambda ratio also decreased to 3.
In June, the doctors at Rajiv Gandhi Hospital, Delhi decreased his dosage by cutting of thalidomide and eventually bortezomib despite increase in his kappa lambda and increase in pain all over hand and legs. And in June end again his M spike rose to 0.13 also there was numbness in lips and his kappa lambda ratio has risen to 9.18 and now the doctor said that now they can't do nothing as the myeloma had spread to the brain.
Now we changed doctors and we did a PET scan on 16th July which showed active myeloma in many parts of the body. (He also had a biopsy but it did not show plasma cells) and he started my father on bortezomib, dex and lenalidomide (10 mg). And our current doctor is adamant on ASCT as soon as the kappa-lambda ratio decreases. M-Spike still is 0.13 and ESR was 64 in June end (now 44).
I will post as soon as we will do kappa lambda tests at end of this chemo cycle.
Can someone please tell about the numbness in the lower lip region. I read on the Internet about numb chin syndrome and I am very afraid. Should I post this as a new discussion thread?
Thank you so much. I wish all of you the best of healths.
Firstly, thank you so much Ms. Nancy Stewart for replying. Firstly, you asked if D5 and D7 vertebrae are the cervical (neck) vertebra. No, they are in the lower spine region. Our doctor had suggested khyphoplasty but on taking a second opinion it was told to us that, as the pain was not in the back region (it is in arms, shoulders and elbow), kyphoplasty must be postponed till back symptoms are shown.
Also, thank you so much Ms. Nancy Shamanna for your reply.
You both asked if my father was seeing a myeloma doctor. Yes, he is.
Thank you so much, Dr. Jason Valent for your valuable suggestion.
To sum up this was the case actually, (I might post a new question if you all want. Actually, I want to share all this with all of you as it is so comforting and relieving to know that people really help and want to listen to you, sorry if I am being melodramatic
)My father had his first cycle of chemo in Jan, 2014. That was of lenalidomide [Revlimid] and dexamethasone. But because of the dex, he developed rashes all over his body.
In Feb, the chemo changed to bortezomib [Velcade], dex and thalidomide. His M spike came to 0 (from 4.1 in Dec) in February end itself. Till May, this regimen was continued. His kappa lambda ratio also decreased to 3.
In June, the doctors at Rajiv Gandhi Hospital, Delhi decreased his dosage by cutting of thalidomide and eventually bortezomib despite increase in his kappa lambda and increase in pain all over hand and legs. And in June end again his M spike rose to 0.13 also there was numbness in lips and his kappa lambda ratio has risen to 9.18 and now the doctor said that now they can't do nothing as the myeloma had spread to the brain.
Now we changed doctors and we did a PET scan on 16th July which showed active myeloma in many parts of the body. (He also had a biopsy but it did not show plasma cells) and he started my father on bortezomib, dex and lenalidomide (10 mg). And our current doctor is adamant on ASCT as soon as the kappa-lambda ratio decreases. M-Spike still is 0.13 and ESR was 64 in June end (now 44).
I will post as soon as we will do kappa lambda tests at end of this chemo cycle.
Can someone please tell about the numbness in the lower lip region. I read on the Internet about numb chin syndrome and I am very afraid. Should I post this as a new discussion thread?
Thank you so much. I wish all of you the best of healths.
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surbhijain93 - Name: Surbhi Jain
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: Dec 24, 2013
- Age at diagnosis: 57
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
Thank you for updating us on what has been going on with your father. I'm glad that you went for a second opinion when you were told that there was nothing more that could be done for your father. He sounds like quite a complicated, perplexing case. Who knows what could be causing the symptoms in your father's lips. Velcade and Thalidomide are notorious for causing peripheral neuropathy in the feet/legs and hands, but can develop anywhere in the body.
It's possible that the rash that your father developed when he was initially treated with Revlimid/Dex was from the Revlimid. It is a well known side effect of Revlimid. Many of the people on this forum, including me, have posted about developing a rash when they first started Revlimid. Usually it resolves by the 2nd or 3rd cycle and/or with a lower dose of Revlimid. If your father isn't experiencing the same problems with this current treatment regimen that includes 10 mg of Revlimid it may be because the dose is lower and/or your father's body has adjusted to the drug.
I pray that this current treatment regimen is successful for your father and his numbers decline and he begins to feel better. Keep us informed of how things are going.
Nancy in Phila
It's possible that the rash that your father developed when he was initially treated with Revlimid/Dex was from the Revlimid. It is a well known side effect of Revlimid. Many of the people on this forum, including me, have posted about developing a rash when they first started Revlimid. Usually it resolves by the 2nd or 3rd cycle and/or with a lower dose of Revlimid. If your father isn't experiencing the same problems with this current treatment regimen that includes 10 mg of Revlimid it may be because the dose is lower and/or your father's body has adjusted to the drug.
I pray that this current treatment regimen is successful for your father and his numbers decline and he begins to feel better. Keep us informed of how things are going.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
Yes, thanks for getting back to us, Surbhir! It sounds like your father has already been through a really stressful time, and he is fortunate to have you looking after him.
I have also experienced numbness in the lower face when on Revlimid, but that has mostly diminished now (not taking chemo at this time). I suppose a different concern might be ONJ (osteonecrosis of the jaw), which a dentist could check out for you. We have a dental clinic at our cancer centre, which gives very thorough checkups, including the most extensive X-rays I ever had of my teeth and jaw.
Hope that your father's health improves, especially with the good treatments that he is taking now. Best wishes, and Namaste!
I have also experienced numbness in the lower face when on Revlimid, but that has mostly diminished now (not taking chemo at this time). I suppose a different concern might be ONJ (osteonecrosis of the jaw), which a dentist could check out for you. We have a dental clinic at our cancer centre, which gives very thorough checkups, including the most extensive X-rays I ever had of my teeth and jaw.
Hope that your father's health improves, especially with the good treatments that he is taking now. Best wishes, and Namaste!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
I am Board certified in Nothing...so bear in mind.
Nerve innervation to the lower face/ chin area is via the trigeminal division of the 5th cranial Nerve/facial nerve. Often referred to as the lingual nerve branch or "downstream" as the "Inferior Alveolar", or "Mental" (Chin) division.
Trauma, Compression, swelling, infection, should be considered. ie. does he have a developing plasmacytoma (Tumor) near the ear, or down in the Ramus/ mandible ? Revlimid intolerance is also a possible issue--however he apparently needs the Revlimid to help control the Myeloma thru his body. Tough call.
By "D" I presume you mean to be referring to the THORACIC areas of the spine. ("T" to Westerners)
I presume that the Neurosurgeon has the best insights to what a traditional Fusion/ Johnson rod/ plates/ screws application or a Kyphoplasty, would yield. Apparently there is already considerable spinal degeneration, in these areas--regardless of approach. A simple dermatone innervation chart should help you understand the Thoracic levels and the nerves in the specific regions, you are concerned with.
An EMG will give further info re: nerve innervation along the Cervical / clavicular and Shoulder Girdles. It is an Uncomfortable test and may upset him, further. Again, nerve compression should be investigated.?
The PET scan will show the extent of cancer activity in the body. Not the best detail--but will show almost all areas of activity. However, the radiology reports reflect wide involvement, already.
I think your father is very ill, at present, with wide metastases of his cancer . His Cancer needs to be brought under control, before restorative / stabilizing / rehabilitative measures are undertaken.
I'm sorry that he is suffering so.
Good luck.
Nerve innervation to the lower face/ chin area is via the trigeminal division of the 5th cranial Nerve/facial nerve. Often referred to as the lingual nerve branch or "downstream" as the "Inferior Alveolar", or "Mental" (Chin) division.
Trauma, Compression, swelling, infection, should be considered. ie. does he have a developing plasmacytoma (Tumor) near the ear, or down in the Ramus/ mandible ? Revlimid intolerance is also a possible issue--however he apparently needs the Revlimid to help control the Myeloma thru his body. Tough call.
By "D" I presume you mean to be referring to the THORACIC areas of the spine. ("T" to Westerners)
I presume that the Neurosurgeon has the best insights to what a traditional Fusion/ Johnson rod/ plates/ screws application or a Kyphoplasty, would yield. Apparently there is already considerable spinal degeneration, in these areas--regardless of approach. A simple dermatone innervation chart should help you understand the Thoracic levels and the nerves in the specific regions, you are concerned with.
An EMG will give further info re: nerve innervation along the Cervical / clavicular and Shoulder Girdles. It is an Uncomfortable test and may upset him, further. Again, nerve compression should be investigated.?
The PET scan will show the extent of cancer activity in the body. Not the best detail--but will show almost all areas of activity. However, the radiology reports reflect wide involvement, already.
I think your father is very ill, at present, with wide metastases of his cancer . His Cancer needs to be brought under control, before restorative / stabilizing / rehabilitative measures are undertaken.
I'm sorry that he is suffering so.
Good luck.
-
Rneb
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
Thank you Ms. Stewart , Ms. Shamanna and Rneb for such meticulous replies.
I will discuss about ONJ and EMG with my doctor.
I just want to update about his report which came today which was as follows:
Kappa, Free Light Chain 14.82 mg/L range (3.30 - 19.40)
Lambda, Free Light Chain 8.18 mg/L range (5.71 - 26.30)
Kappa/Lambda, Ratio 1.81 range(0.26 - 1.65)
Although his
Hemoglobin was 11.90 range (13.00-17.00)
PCV is 36.30 range (40.00-50.00)
RBC is 4.02 range (4.50-5.50)
RDW is 15 range (11.50-14.50)
Lymphocytes is 16.80 range (20.00-40.00)
and ESR 32 range (0.00-20.00)
But we are quite happy about the kappa-lambda report. His M-spike report will be coming in a couple of hours that I will tell as soon as it comes.
He still has numbness in his lower lip. Also, there is now a little swelling in his lower lip.
I will discuss about ONJ and EMG with my doctor.
I just want to update about his report which came today which was as follows:
Kappa, Free Light Chain 14.82 mg/L range (3.30 - 19.40)
Lambda, Free Light Chain 8.18 mg/L range (5.71 - 26.30)
Kappa/Lambda, Ratio 1.81 range(0.26 - 1.65)
Although his
Hemoglobin was 11.90 range (13.00-17.00)
PCV is 36.30 range (40.00-50.00)
RBC is 4.02 range (4.50-5.50)
RDW is 15 range (11.50-14.50)
Lymphocytes is 16.80 range (20.00-40.00)
and ESR 32 range (0.00-20.00)
But we are quite happy about the kappa-lambda report. His M-spike report will be coming in a couple of hours that I will tell as soon as it comes.
He still has numbness in his lower lip. Also, there is now a little swelling in his lower lip.
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surbhijain93 - Name: Surbhi Jain
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: Dec 24, 2013
- Age at diagnosis: 57
Re: Pain in legs & arms - D5 & D7 collapsed (full history)
Thanks for this update. It's great to see that the new treatment regimen is bringing your father's free light chain numbers back into normal ranges. That's wonderful news.
How is your father doing in general? Is he feeling stronger and like he is feeling better overall?
How is your father doing in general? Is he feeling stronger and like he is feeling better overall?
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