I am an American receiving chemo treatment for my myeloma in Warsaw, Poland. While the care is great, I cannot attend the support groups as my Polish is not strong enough. I am looking for any online support groups to talk about the experience of chemo and cancer treatment. Any tips are welcome.
Hello and happy Wednesday everyone. I know we are not doctors but I just would really appreciate any inputs of suggestions because I’m really tired and want to figure out what’s wrong with me. Appreciate anything really thanks so much.
So in context 33yr old female
I have had a lot of systemic issues that started 6/7 years ago and it started with night sweats. And I’ve been dealing with on and off chronic pain, nausea, fatigue etc.
but recently things have been worse and more consistent
- night sweats
- around 6pm every evening I get like hot flash feeling like feeling sick internally and under skin
- bone/joint pain that changes areas and fluctuates can be dull with also sharp pain that comes in waves
- muscles twitches a lot
- numbness and specially in toes these days
- fatigue
- nausea lack of appetite at times, vomitted a few times the other month. Always in the evening.
- lost almost 20lbs without trying (everyone keeps asking if I’m okay)
- swollen fingers in the morning
Basically my rheumatologist says my Ana could be undifferentiated connective tissue disease but does not explain a lot of my symptoms
Oncologist says my levels of lambda bands are small and so it’s not hematology issue. And that my electrophoresis results can be a UTI which I don’t have right now.
I am honestly just so tired of feeling this way and I want to feel normal again. I literally am in tears every time I go to the doctors because I’m tired.
IMMUNOFIXATION, SERUM
IFE INTERPRETATION
- IgG lambda monoclonal band present.
(This was on multiple blood tests and was present but not present in urine)
PROTEIN, TOTAL AND PROTEIN ELECTROPHORESIS, URINE
PROTEIN, TOTAL, 24 HR UR 136 mg/24hr
PROTEIN/CREATININE RATIO 0.082
ALBUMIN 20%
ALPHA-1-GLOBULINS 3%
ALPHA-2-GLOBULINS 20%
BETA GLOBULINS 23%
GAMMA GLOBULINS 34%
INTERPRETATION
Pattern consistent with glomerular proteinuria.
No abnormal bands suggestive of monoclonal free light
chain (Bence Jones protein) detected.
ALPHA 2 GLOBULIN 0.9H
ABNORMAL PROTEIN BAND 1 0.1H
ABSOLUTE EOSINOPHILS 10L
SED RATE BY MODIFIED WESTERGREN 22H
EGFR - ranges from 72-88 usually(normal but low for my age)
My other results are either within or borderline normal so did not bother to post.
ANA SCREEN, IFA Positive
ANA TITER 1:320 Nucleolar nuclear
ANA TITER 1:80 speckled nuclear
(I had same ANA patterns last year but it was lower titer at the time and it has not gone up)
***EVERY specific Ana test I’ve taken has come out negative though like literally every autoimmune test)
URINALYSIS REFLEX (test was done three different times and showed up on each)
KETONES trace
PROTEIN trace
LEUKOCYTE ESTERASE Trace(sterile)
RED BLOOD CELL COUNT 3.95
CREATININE, RANDOM URINE 234 mg/dL
KAPPA/LAMBDA LIGHT CHAINS FREE WITH RATIO, SERUM
KAPPA LIGHT CHAIN, FREE, SERUM 11.4mg/L
LAMBDA LIGHT CHAIN, FREE, SERUM 11.4mgL
KAPPA/LAMBDA LIGHT CHAINS FREE WITH RATIO, SERUM 1.0
I finally reached my 100 days several weeks ago and had my biopsy 2 weeks ago. The transplant Dr ask me to reach out to the office today to get results.
I called the office this morning and had to leave a message. I was able to login to my patient portal account and I was looking at the Coloseq report that stated I was in remission. I cried right then an there on a couch. The past 12 months have been hell, getting chemo weekly for 7 months, going through the whole process in getting ready for the auto stem cell transplant. Then recovering from it. It was all a lot.
I then get a call back a couple hours later from the Dr and she basically told me everything I just found out. I'll begin maintenance soon. My wife was so happy, but I didn't cry, I had already cried a couple hours ago. Not 5 mins after I said I had already cried, tear just start running down my cheeks. I had to tell myself that I was proud of everything that I had done. It was like being on a rollercoaster, and now I get to ride the kiddy tea cups.
I'm very happy for the results, happy for all the support I got along the way from family. One thing I'm not excited for is taking lenalidomide again, I hate that drug.
To everyone else that is on this journey and are nervous about their upcoming ASCT, I pray for you. The transplant itself is really no big deal, the days after are, but you've made it this far because you have so much life left to live. Also cheers to everyone who is years past their ASCT and living their lives. F cancer!
My Dad (65, Irish) was diagnosed with Multiple Myeloma and Amyloidosis 3 years ago - he was given 3 weeks - 3 months to live then but thankfully is still with us today. He has taken well to most treatments in that time however recently his condition has deteriorated - he is on oxygen now etc. The main issue now is not the myeloma but the amyloidosis, which has spread from his heart to his lungs and is quite frankly perplexing the doctors. He tried daratumumab last month but had a terrible reaction and almost ended up on a ventilator. We were then given the option of palliative care end of life support or to try teclistamab, a similar drug to the daratumumab which could have potentially similar catastrophic side effects. Some doctors and medical personnel think we should try it, others think its a massive risk - I’m more so coming on here for some second opinions/help and advice from those who have gone through similar experiences before
I’m 30F
I’m currently in the process of freezing my eggs before my ASCT, but I’m worried about the fact that I was on pomalid cuz the Internet says it can cause problems with the egg.
Any female here who had an ASCT young? Does it push you into menopause? What are the chances of a natural pregnancy after ASCT?
The MM specialist didn't seem too concerned, which made me think they didn't read my spring labs, but I understand this marker to be a precursor.My full workup has been great since 2021, though I just found out I have osteoporosis, which makes me think the myeloma might be waking up... I have labs again in July and getting another full body MRI but suspect elevated IgG will follow. Just looking for your experience or thoughts on this marker
HELLO EVERYONE I want a share with you Father is 57 years old and was diagnosed about 6 months ago with plasma cell neoplasm / multiple myeloma (ISS stage 2). His genetic tests came back normal.
His treatment process went as follows:
First, he received VBD treatment.
Later, he was switched to the VRD protocol.
Overall, he responded well to treatment.
Afterwards, he underwent an autologous stem cell transplant.
He stayed in the hospital for 18 days and was then discharged. However, when the whole process started, he weighed 82 kg, and now he is down to 64 kg.
At the moment, because of the post-transplant high-dose Melphalan damage/effects, he is struggling to eat. He has persistent nausea and vomiting.
I have a few questions for people who have gone through a similar process:
When did your appetite come back after transplant?
How did you stop the weight loss?
Did anyone experience bile vomiting or severe stomach sensitivity?
How long did it take before you started gaining weight again?
What helped the most during this period?
I would really appreciate hearing about similar experiences. Thank you in advance.
My father got second line of treatment after lenalidomide didn't work 2 years after its initiation. New combination is Kyprolis, Darzalex and prednizone. Do you have any tips and tricks or advice?
Hi
I’m 30F, scheduled for ASCT in the second half of June. They said I’d be allowed to keep a caregiver with me during my 21 day hospital stay. The doctor said the caregiver (in this case, my husband) will just have to be there for me and entertain me.
My husband is a high court lawyer so he plans to fight his cases online in the lobby area.
My concern is, will this arrangement work? Will I be too weak to say, shower or go to the washroom? Will I be dependent on the caretaker? So I can prepare him accordingly. Cuz the doctor sure made it sound breezy.