Confused and concerned

Hi again Myrasgirl and sorry to hear your latest news. Your head must be in a spin with having to deal with so much.

What to do?……

You need to get your Haematologist and the consultant who is dealing with your secondary breast cancer to talk to each other and for them to agree a plan that is based on the greater need with regards to your conditions.

These discussions often happen at a hospital’s MDT (multidisciplinary team) meeting when all the specialists will get together to decide what is the best course of treatment for you.

Depending on the actual type of SCT….. be it an Allo (Allograft) using donor Stem Cells or an Auto (Autologous) where you are put into remission and your clean Stem Cells are harvested and then returned…… the next 6 months could  be challenging…….. I know the Allo SCT journey very well as I have had 2 for my very rare type of Lymphoma.

I think the basic question you need an answer for is what is the greatest need for you right now…… and what does the plan look like going forward.

The noise between your ears will be loud at the moment so you may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00.

This service provides cancer information, practical information, emotional support or just a listening ear.

Always around to chat ((hugs))

Hello and thanks for the response . I am wondering if treatment is necessary at this stage as my plasma count is 12 percent and  I ve read that not until its over 60 is treatment started. I asked the haemotoligst this as I ve also read that it can stay between 10 and 60 and never cause any problems . She says that planning ahead is critical in case ? 

I do aldo have PMP the rare appendicael camcer so a third is a challenge to say the least . 

Did anyone start treatment with no symptoms,low para proteins and such low percentage of plasma ? I m new ish to this so hope tjat makes sense to you  x 

Hiya 

Thanks for the response . I guess I m hoping that as I am asymptomatic and with inly 12 %plasma cell at my last BMB, I may not need treatment yet .

Has anyone else started treatment when they were asymptomatic,and below 60 % plasma ....which I ve read is the trigger for treatment ?

If we were talking about my rare (7 in a million) type of Non Hodgkins Lymphoma I could talk from first hand experience but but Myeloma is a different thread in the blood cancers……

Lets see if any of the group members are looking in and can give you some lived experience.

I will say that SCT is demanding and so all ‘other’ medical conditions are assessed in respect to making the SCT process more challenging then it would normally be….. I also have Asbestosis so I had to have significant lung testing done to check if there would be problems….. it was seen as an acceptable risk….. although we had no real option as without a successful Allo SCT I would only have had a few years and that would have been in palliative care….. but 8 years on a few new drugs have come on line fir my Lymphoma so I now have a fall back if required.

There is always Hope ((hugs))

Hi  Myrasgirl,   Vespa here,  AKA  Kevin,     Mike   gives  sound advice,  i  have MM   diagnosed June  last year,  now  35 days post Stem  Cell Transplant,   and  21 days   from Hospital  discharge,     i hope the two  teams can get together,  and work out the  care plan,      if   the  haematologist consultant is asking for another BMT  seems they are looking for  final  confirmation of MM  and the levels,      i hope they focus on the primary Cancer,  first  get that    controlled,  MM  and  the   first rounds of treatment,  will  possibly take,    4 months,  of DVTB    to get your MM into  remission before Stem cell Harvest,   which is totally painless   just  boring,   the SCT  is  also painless,  but  a demand on your body,   after Chemotherapy and  then transplant,       also   you will probably be aware that your whole body   Immune system  is   at its lowest,     the SCT  forum here on Macmillan is great,  and   helped me a lot,   i am doing good,     still not easy,   getting my body back to  full energy   and my diet,      i hope you get some  great advice and can move forward with the  diagnosis,       A lot for you to deal with right now,  and you need good support around you from family and health care  professionals    Kevin 

Hi Myrasgirl

I too am very confused! Three years ago I was diagnosed with MM with Kappa Light Chain & have been monitored with scans, bone marrow biopsies & blood tests.  Apparently I am on borderline for treatment although I was given all information on treatments & signed the necessary Acceptance Form to go ahead with treatments (which I thought would be imminent). However, after latest appointment I’ve been told that it’s good news as my relevant reading is 40% & won’t need treatment until it reaches 60%?  Also mentioned MGUS so I’m ow wondering. If I have MM.

One minute I’m on monthly checkups & now back on 3monthly checks. I’m feeling guilty for not being happy with the latest news & so confused! Still have all the aches & pains & fatigue etc!!

Hi, I am in the same position as yourselves. Diagnosed with MM, stage 1, last August through a test I didn’t even know I was having. I thought my tests were for thyroid levels only, so much for informed consent. My light chains are high but stable atm. I have no symptoms and my MRI was clear of lesions. The advice I have been given is conflicting and not helped by the fact I’m being seen between two hospitals. Initially I was told they would jump in and get full chemo/SCT due to my younger age. I have been having monthly bloods and was told recently I could go longer between tests if I wanted. I forever feel as if the axe is waiting to fall. Whilst I do not want to go through treatment before I need to it’s difficult to get a benchmark to compare to. I am wondering if there are so many people being diagnosed that the treatment criteria is being changed so they can deal with more acute cases. It’s also a very fast moving area of oncology so new treatments may being impacting on care. Not sure if this information helps but I am having difficulty understanding/establishing how many people are having the same experience as myself.

Hi GW2 I think maybe you are correct in your last paragraph - when I first started out on my journey, I was seen in the clinic almost immediately on arrival but moving on 3years, I have had to wait up to 3hrs to see my doctor.  I believe that as more people are diagnosed with different cancers, the staff are under tremendous pressure to cope.  Or,maybe at my great age of 78yrs, I am running out of points!!